Team Telomere, Inc.

Team Telomere understands the challenges facing patients & families with Dyskeratosis Congenita and Telomere Biology Disorders, including the need to connect with others who are going through the rare disease journey.

In addition, Team Telomere works closely with researchers to advance the knowledge of telomere body disorders. They have distributed thousands of copies of the Diagnosis & Management Guidelines and have sent care packages to patients in over 20 countries & have helped support countless families.

Team Telomere is an outstanding nonprofit organization! It is powered by a compassionate and driven group of individuals who truly understand the difference an organization like this can make on a person's life. I am reminded of the time my father was diagnosed with a rare disease, and the nonprofit organization aligned to that disease helped my family and I immensely. I am humbled to be able to assist in creating this type of positive human impact, and I applaud Team Telomere for being a beacon of light for so many individuals who are struggling with the health challenges that this disease brings.

Team Telomere has been the support system my family has needed to get through the most difficult times. They have brought support and knowledge when we needed it the most!

Team Telomere is a remarkable, efficiently run organization that supports funding, research and hopefully a cure for an insidious disease called Dyskeratosis Congenital. Please help support this organization’s important efforts!

Team Telomere is truly a life changing and life saving nonprofit focused on bringing awareness to one of the rarest diseases in the world. This well organized nonprofit has been able to attract some of the best scientists and doctors from around the world to work together to develop a cure to save lives. Thank you Team Telomere and keep bringing awareness to this rare disease that affects people from children to grown adults. Keep pushing!

First, my father got pulmonary fibrosis. Then my uncle developed it. Both were in their mid 70s when diagnosed. A year later, I was diagnosed with pulmonary fibrosis. I was just 55. Because PF is rare, it sent up a flag that there was a genetic issue in the family- Telomere Biology Disorder. This is a very rare, devastating disease that portends premature death and lots of health traumas. It is a scary, lonely situation. Team Telomere has helped navigate the health system, enabled me to meet others who are experiencing the same thing, connected me with experts who have advised me on specific issues to watch for, and has even provided me with physician advisors who actually will speak with my doctors to educate them on how to take care of me.

Without Team Telomere, I’d literally be dead by now.

Team Telomere is an extraordinary nonprofit organization that brings hope, support, and inspiration to individuals and families affected by telomere biology disorders. Everyone involved in the organization is deeply committed to the mission of finding a cure for TBD. The support network they provide is a lifeline for so many patients and family members. Through online forums, educational programs, and fundraising efforts, Team Telomere is a global leader in the TBD field and community and is an outstanding example for other rare disease nonprofits to emulate. In addition to their outstanding advocacy, the people behind Team Telomere are approachable, warm, and passionate. They go above and beyond to ensure that no one facing these rare disorders feels alone. It has been and continues to be an honor and privilege to work with Team Telomere.

I have been a part of the Team Telomere community for ~2 years. I came to it looking for resources, answers and a way to find a cure for this rare and complicated disease. What I found was a community of support, ways to get involved, and incredible connections to the medical community. As I've engaged with other non-profits, I've come to learn how well run Team Telomere is. The Executive Director has grown the organization strategically and intentionally. She has built strong support and engagement with the medical community including a world-class Scientific Summit with researchers and clinicians attending from around the world. The team provides high quality resources for patients to leverage with their physicians and connection to a network of centers that specialize in treating Telomere Biology Disorders. Lots of impressive work focused on caring for this rare community and the tireless work to gain access to quality care and some day a cure.

Team Telomere is an amazing community of people, kids and adults, who share a common underlying condition, despite all the many varied presentations. I appreciate all the events that Team Telomere coordinates to bring this community together, including connecting patients and families with medical professionals who are working towards better treatment options. Going forward I intend to continue my involvement with this organization and am looking forward to seeing it grow and thrive even more.

Team Telomere continues to expand its reach and impact in community support and research in Telomere Biology Disorders. A highlight of this year was the Team Telomere Community and Scientific Summit in Idaho. It is an honor to work side-by-side with this remarkable organization to support and change the outcomes for individuals with TBDs.

Volunteering at Team Telomere's Symposium this summer was an absolutely incredible experience. Witnessing the strong, supportive community they’ve built was truly magical. TT provides invaluable support to families and fosters remarkable collaboration between patients, clinicians, and researchers. It was inspiring to see the direct connection between the community and the scientific experts working to advance understanding and treatment of Telomere Biology Disorders. I am genuinely inspired by the work they do and proud to have been part of it.

Team Telomere is the Model for what a Patient/Family Advocacy and Support Group should be for patients with rare diseases. What they have accomplished is truly amazing.

Team Telomere, Inc. has been an excellent source of information for my family. We learned my 12-year old nephew had Dyskeratosis Congenita and required a bone marrow transplant from an anonymous donor four years ago.

Nothing prepares a person for a diagnosis like DC, we grateful for Team Telomere's subject matter expertise.

Our daughter needed a bone marrow transplant and team telomere provided us with knowledge and resources we desperately needed. They continue to provide support and a sense of community.

This is an amazing organization that stays true to their mission. It is an honor to be a part of this group.

I serve on the Board of Team Telomere and anm inspired by the dedication and passion of the organization to serve families with Dyskeratosis Congenital and related telomere biology disorders. The commitment to the mission to make a difference in these families lives is unwavering.

Team Telomere is a fantastic organization that is focused on the Telomere Biology disorders (TBD) community. The staff are dedicated to ensuring equitable care, access and support to all patients and caregivers. Through this organization the TBD community has been active in research, scientific collaboration, community support, public policy and advocacy. It is a privilege to be a part of this wonderful organization supporting their work for the entire TBD community.

Team Telomere is one of those names in the rare disease space that holds respect and admiration, regardless of what community you come from. The ED is dedicated, approachable and beyond committed to the TBD community. They are shining light in this space and their disease community is lucky to have them.

This organization has always stood out to me in the rare disease space, which is why I was interested in joining their Board. They are dedicated to making the Telomere Biology Disorder community feel seen and supported, and through this effort they have been able to start driving the science forward for treatments and cures. They have the right order of events and through this they have fostered trust in the community, which is only continuing to drive big changes in the TBD space.

Team Telomere continues to provide community and thought leadership to those impacted by telomere disorders. They are brining patients, clinicians and researchers together to create a better tomorrow for those facing very difficult and rare medical conditions. Team Telomere sets a benchmark for other organizations and the rare disease community.

Having an extremely rare telomere disorder, I often feel alone. My twin boys who are in middle school have this disorder too. But no one around here knows about it. Most people don't even know what telomeres are. This group gives me insight to what others are going through who are dealing with the same issues.

There aren’t enough words to express what Team Telomere means to my family. There is nothing more frustrating and heart wrenching than to try to navigate a disease of which so few physicians are familiar. This organization is like family. They offer support, resources and hope! We would be lost without them!

I went undiagnosed with a Telomere disease for 31 years of my life. When I was diagnosed, the local healthcare providers didn’t have many patients or informational protocols for best care. Thanks to Team Telomere, I was able to find resources and assistance through a caring community. I attended many informational sessions regarding my disease and became well acquainted with many people within the Team Telomere network. Due to Team Telomere’s work, I was able to get help with my diagnosis, better understand the journey, and be more proactive about my health. Team Telomere was especially critical with helping me find physicians who specifically treat my conditions. The entire team does an amazing job at welcoming Telomere Disease impacted people into their family. Without their help, I would truly be lost when it comes to navigating my Telomere Disease.

Team Telomere does a beautiful job supporting families through their journey with Telomere disorders. They provide information, funding and hope. They are constantly striving to find new ways to aid families, whether it be through care packages, their community assistance program, or their book club. They are doing tremendous things, and they will find a cure.

Great resources and people to help navigate or health challenges

As the mother of a child in New Zealand with Dyskeratosis Congenita, I can not thank Team Telomere enough for the support we have received over the last 7 years, both peer and community support, as well as support from the medical advisory board. Without them and their continued advocacy it would be a very lonely journey.

I am lucky to find this organization as I was diagnosed in my late 40's but have had the related issues all my life. The Team Telomere representatives welcomed me with open arms and the welcome care package was great. I have enjoyed the interactions the last 4 years and looking forward to more. They are kind, knowledgeable and will go the extra mile to help with answers and connections to the leaders in this field.

Having a rare disease is awful for several reasons. But having Team Telomere there helps with one drawback and that is finding people who know about the disease and who have experience with the symptoms and treatment. Most doctors have never heard of the disease, so I am having to educate my docs. I can do that with the help of the community, and to a strong degree, the research, medical protocol book they publish, as well as access to their Board, most of whom are doctors who treat telomere related diseases. Thank heavens for Team Telomere!

This is a wonderful organization that provides immeasurable support for the telomere biology disorder community. From care packages for new patients, to community grants, to providing research grants and medical guidelines and protocols, Team Telomere does so much.

Team Telomere has helped me so much to understand my disease process and connect with others who also have it. When I was extremely sick, they sent a care package to cheer up my kiddos. They also provided support and encouragement throughout my stem cell transplant journey.

Being a caretaker for my wife who was ill with a telomere biology disorder was the single most rewarding, challenging and fulfilling experience of my life. This was only possible with the help of Team Telomere. When she was first diagnosed, we had no idea what was in store for us. She immediately felt loved and welcomed by TT members who shared their journey and helped her (and consequently me) for her journey. Each step of the way, there was a phone call, a doctor's insight, a care package or a virtual hug to help us along. And after she passed, all too soon at the age of 31, Team Telomere helped me in my recovery and in my darkest days with the same love they showed my wife. I will be forever grateful.

Team Telomere is an amazing resource for researchers studying telomere syndromes and their biological consequences. It provides a series of resources for scientists to connect with patients and advocates, leading to improved knowledge on how these syndromes manifest and therefore help guiding our experiments in lab. In addition, it provides much needed research support for the field, helping us expand our research goals and bringing us closer to improved treatment for patients

Team Telomere was such a great support during such a difficult time in our lives. Dealing with a rare disorder is hard enough, but they were able to provide resources for my husband, my family, as well as the medical team. Although my husband lost his battle, I know we did everything that possibly could be done. The outreach from members of team telomere was outstanding. I got a few texts just saying someone was thinking of us and asking if we needed anything. I can't express how deep my gratitude is for this wonderful organization.

Team Telomere has been an amazing, informative and supportive resource to me and my family. My husband and our three little boys were diagnosed with Dyskeratosis Congenita 6 years ago, before my youngest was even born. It was overwhelming to say the least. Once I connected with team telomere, not only did I gain access to the best information out there, but to a whole group of people who knew what we were going through. We no longer felt alone and have been supported ever since. I don’t even like to think where we would be today without team telomere.

Team telomere Inc has been life saving and changing for our family. Our daughter was diagnosed in 2014 with DC and when I reached out to them for guidance, the small but mighty group of volunteers at the time helped us navigate this rare disease world. Over the last 7 yrs this group has grown and thrived under the direction of dedicated volunteers and medical advisory board to support families all over the world. We are supported in so many ways Making this often lonely rare disease world full of love and companionship.

I have had the pleasure to work with TT for a couple of years now. The organization is deeply committed to the community and continues to evolve with the ever changing world of rare disease. Watching the organization and community grow has been amazing. I cannot wait to see what TT does next!!

Team Telomere is truly an amazing organization that plays an integral, invaluable role in the Telomere Biology Disorder community. From increasing awareness; advocating for patients; connecting and supporting patients, their families, health professionals, and researchers; and so much more, this organization goes above and beyond in every way. I, personally, cannot imagine where I would be without this organization. Thank you, Team Telomere!

I am an employee of Team Telomere and I am proud to work alongside the Executive Director and the wonderful group of Board of Directors who help make all of this possible. Team Telomere strives to provide the best research and advocacy by supporting/educating patients and families with Telomere Biology Disorders. The effort that Team Telomere puts into all the organization's programs really makes it stand out from the rest. I am glad to work for such a great organization who goes the extra mile to help people in need.

Team telomere has been a god sent to me since first being diagnosed in 2016. This past year alone the community supported me through a failed bone marrow transplant and a second transplant a few months later. The staff is always willing to go above and beyond to provide resources and connect you with experts. In addition I was given the personal contact to Katie Stevens who helped me through some of the most difficult time. Being diagnosed with a rare disease is scary, and having this community makes you feel less alone.

Team Telomere has played an integral role in my family’s lives. Through Team Telomere my daughter and son-in-law found Camp Sunshine, Dr. Suneet Agarwal and a cure for our grandson. Team Telomere not only provided a light at the end of a tunnel, it opened up the entire world to my daughter. She has formed life long friends with other mothers fighting for their children. I, as her mother, could not be more grateful for the hard work Team Telomere does to advocate for patients and families, the fundraising they do to help move science forward, the scholarships given and the tireless hours they work to continue to expand their reach.
I am grateful for and proud of Team Telomere!

Team Telomere provides assistance from the most basic ways like care packages to Herculean endeavors like funding rare disease research and amplifying the limited funding that exists. The biggest benefit though may be the way TT makes connections that literally save lives. I’m proud to be a sustaining supporter.

I became a part of this community after volunteering at a Camp session with patients. I am now a part of a devoted and passionate organization that goes above and beyond for the families it serves. Continuing to build community in the rare world of telomere biology disorders.

Team telemere has made a huge impact on our lives. When my husband was diagnosed with DC we knew nothing about it. We came across team telemere and had so much information shared with us as well as hope for a cure through research. Because of this amazing non-profit we have met other families dealing with the same issues and or disease and made friends for life. Team telemere is a true blessing in the rare community.

An absolute gem in the rare disease world. An organization whose passion for Telomere research and genuine compassion for individuals with TBD’s collide in a most beautiful way as we battle each and every day against a horrific disease. I am both a client served and a board member, and am so very proud to work alongside the Executive Director and with the support of an excellent Board of Directors.

Team Telomere is such an amazing advocacy and support group for families worldwide affected by Dyskeratosis Congenita and Telomere Biology Disorders! I especially love how they collaborate with and learn from others in the rare disease community!

What I love so much about Team Telomere is, Katie Stevens! Learning about her story and what brought her to the organization really touched me as a mom to a rare disease kiddo. I love knowing there are real patients and advocates behind organizations and putting a face to their mission. You do not need to share a diagnosis to connect and collaborate and Team Telomere is great at it!

An amazing organization. They do it all. Patient support, grants funding research, connecting patients with physicians. Education opportunities, and on and on.
It’s a mighty group advocating for a very rare disease.

Team Telomere are always there to support patients and their families not only emotionalyl but with medical insight and recommendations. They are always striving to find new ways to help patients be it through fund raising, bringing our small community together or raising the profile of teleport biology disorders throughout the medical community.

My son was diagnosed with Dyskeratosis Congenita in December 2018. I was devastated and scared! I joined a support group for my son's rare disorder on facebook. The support grouo is where I learned about Team Telomere! They were very supportive right from the very beginning! They sent my son a care package, which he took with him to hospital for his bone marrow transplant. The blanket they made and put in care package is now his favorite! They continue to offer support! I don't know what I would do without Team Telomere!

Team Telomere has been am amazing source of information and inspiration. They have assisted me in finding the right medical staff to treat my son since a very difficult rare diagnosis. They have welcomed us as part of the "rare" family with open arms.

The charity Team Telomere means the absolute world to our family. Our beautiful daughter was diagnosed with Dyskeratosis Congenita 2 years ago. It is an incredibly lonely disease as it is so rare but this charity brings families together. They support, encourage, advocate and care about us all. They are committed to finding a cure for this awful disease and I really don’t know where we would be without them.
The executive director Katie Stevens is a remarkable women who is literally moving mountains for this charity and the families effected. She is amazing.

Team Telomere, Inc. has been our family’s support in many ways, since my son’s diagnosis in 2016. We truly would have been lost with out them.

Team Telomere is an amazing help to patients, patient advocates and the entire medical community. They help families make connections to physicians who specialize in the myriad of different symptoms that present with diseases of the telomere. They connect physicians who are not as knowledgeable to specialists who can give advice or suggest options. They provide hope, advice, loving care, suggestions, options, connections and solutions for patients and patient advocates for the life threatening symptoms and the everyday worries and struggles that come with having a rare disease. They are truly deserving of the 2019 top rated non-profit award! Diane O'Mara

Meeting team telomere this year was amazing. It's a connection that is beyond words, a family sharing a journey together and finding power in that. Katie, the manager, is such a joyous person and that radiates all around. Thank you team telomere

Team Telomere is a wonderful organization! Supportive to the families and so helpful in giving support and advice for medical treatment. Makes all the difference, when you dont feel you are alone out there!

Team Telomere is a lifeline for many families effected by Dyskeratosis Congenita. This organization helps us stay connected with doctors, patients and other parents going through similar journeys. Dealing with this disease can be complicated as it is so rare. Team Telomere keeps us informed and also finds ways to connect you to facilities that are more experienced with these patients. I honestly don’t know how I would deal with my sons disease if it wasn’t for this organization.

We love Team Telomere. During the time my son needed some encouragement, surprisingly Team Telomere package arrived. He was so excited knowing that he has many fro who care about him. You guys rock!

Team Telomere have been an absolute godsend to me and our family. We are from New Zealand and without the support and community to Team Telomere it would have been a very lonely journey. Our daughter was diagnosed in 2014 when she was just four years old. She had a successful bone marrow transplant in 2015 and we have had continuous contact with Team Telomere. We have now travelled to the States twice to attend Camp Sunshine, and on our most recent trip we were able to incorporate a trip to Boston Children's Hospital where Gabby received treatment unavailable in New Zealand. This would not have been possible if not for the assistance of Team Telomere and the Medical Advisory Board. Without any exaggeration, they saved Gabby from losing her eyesight. We are forever grateful to Team Telomere for the support that they offer to their community.

So grateful to have found this Organization/Community after my daughter was diagnosed. When you first get that diagnosis of a rare disease, you think, if this disease only affects one in a million people how am I ever going to find someone who can relate and help me. Team Telomere goes above and beyond all of that. The people that I have been connected to and the advice and stories that have been shared have made a incredibly scary diagnosis a lot easier to deal with.

I saw how this wonderful organization helped a dear friend and her while family when one of her children was diagnosed with Aplastic anemia and dyskeratosis congenita. Rare parent need more support!!! They were actually turned down for help because he didnt have cancer, as if his life threatening condition didnt matter. It was to rare to have thousand of charities with benefits so they fought almost alone. Not to down play cancer I list my mother when she was only 52 to cancer we need research but cancer has lots of funding and charities for it.....the rare community does no we need to spread the love!!

Team Telomere is an organization with great warmth, energy and vision. It is a lifeline for individuals and families impacted by telomere disorders like Dyskeratosis Congenita. Team Telomere embraces its families at all stages in their DC journey, providing critical information and empathetic support. The organization also maintains close ties to the leading researchers and physicians in the field.

Team Telomere has been the greatest support to my family as we dealt with our sons diagnosis this year. Not only the information that I’ve been given and have learnt through Team Telomere, but the emotion support and friendships that I’ve gained has helped me through the toughest year we’ve had yet.
Grayson loved his care package and I cannot say how valuable the guidelines book has been to me!
We are the only family with DC in this hospital and as far as we know QLD, so it’s been so vital that we’ve had this organisation to make us feel less isolated, even if we are on the other side of the world to most.

My son has a telomere-related disease Dyskeratosis Congenita. Teamtelomere has provided us with lots of information to help and guide us. It connected us with medical expertise to help us figure out what to do. It gave us many connections to other families to share experiences that help us figure out what to look for. It has made us realize that we are not alone in this journey.

I can’t express everything that Team Telomere has done to assist my family. When Your child is diagnosed with something like Dyskeratosis Congenita, there’s usually no support for such a rare dissease with knowledgeable medical staff and definitely no other parents readily available to talk with. After doing my search on the web very quickly I find my support group and Team Telomere has yet to skip a beat. This is a team built on family values and nurtures each newcomer as the first. I experienced this firsthand. The immense support, planned meetings, and info at my fingers tips has been incredible... and it’s all coordinated and accomplished by a nonprofit. Team Telomere has helped connect my son's doctors with specialists near and far, with factual medical advice, advocating for theirs and OURS continuing education and so, so much more! I have connected with people who have been or are currently in my shoes, walking this trail from beginning to end WITH ME. We are family. The strength and compassion expressed by each member is unmatched and I could never replenish the gratitude by me alone for all they have done. I am blessed having found Team Telomere and I THANK each and every one of them working behind the scenes.

Ten years ago, my son was clinically diagnosed with DC/HH based on his physical presentations. I truly felt alone as even the slew of doctors we had seen had never, ever heard of it. I had to repeatedly say and spell the name of the disorder for highly educated specialist and nurses since it was extremely rare. When I found Team Telomere (formerly DC Outreach), I read the “family stories” and couldn’t believe the similarities described in the other patients, as if they could have been describing my son and taking the words right out of my mouth. After that, things rolled quickly as I was able to get in touch with others who had been through the treatment that had been recommended to us for my son. We were put in touch with the leading physicians and scientists who were determined to help us and help decide what course of action was best and when to act on it. I truly believe my son’s life was extended for the last ten years due to the action we took based on information that was learned and the action we took that was all set in motion by finding Team Telomere. Ten years later, I am thrilled that Team Telomere has continued to advocate for patients and helped so many parents, caretakers, siblings and doctors around the world. They immediately take a scared, newly diagnosed member or caretaker and put them at ease, first and foremost, letting them know they are now not alone and never will be again. They continuously gain knowledge and help empower members so they can navigate their way through these awful telomere biology disorders. Team Telomere is not just a group of commonly diagnosed people, it’s a family, and they include all who are involved: parents, siblings, doctors etc in their mission. It is a whole village of people who came together in an unexpected way, but are then forever connected.

Team Telomere has been an amazing support to myself and family over the years. When I found out my son had a rare illness it was the only place I could find valuable information and connect with other parents going through the same journey as us

Team Telomere is an amazing nonprofit!
My son was diagnosed with Dyskeratosis Congenita in 2016. When our family received the diagnosis we felt so alone. Our doctors suggested reaching out to online support groups to connect with other families dealing with DC. It took some time to settle into our new way of life, living with DC, but connecting with other families experiencing some of the same struggles and unknowns has made us feel less alone.
Thank you, Team Telomere for everything!
With much love!

Team Telomere has helped my family tremendously. When my son was diagnosed with Dyskeratosis Congenita, I didn't know where to turn for support, or who to ask medical questions. Since the disease is so rare, even the doctors didn't always know what to do, or what to expect. Team Telomere has helped connect my son's doctors with specialists around the world, hello with medical advice, advocate for education and so much more. The other families have also shared their stories and experiences. They feel like family. We feel extremely blessed to have found this organization.

They have been great and awesome. They answer questions and always there wgen you need them.

After two years of feeling isolated and lost, we finally received the diagnosis. DCOutreach provided not only support but also access to the latest information about DC and about its treatment.
I feel hope because I know we are not alone and because I know DCOutreach is working hard to help fund the next phase of research to treat and cure DC.

When my son was mistakenly diagnosed with Dyskeratosis Congenita, we found DCO. Then-President, Robin Huiras, was exceptionally inviting to us and offered all kinds of information and support. From giving us names of the real expert doctors and researchers to contact, to inviting our family to a special camp week in Maine, the whole group made us feel like a family. One of the biggest things was the DCO Guidelines for treatment book. This helped immensely in our own education of medical "experts" along the way. The monthly teleconference with doctors was especially helpful to us and ended up helping us achieve a correct diagnosis for our son, who is doing fantastic, almost a year post-bone marrow transplant. These are all amazing people fighting horrific battles, living life as an outsider cannot imagine, and they all find the time to help each other and others. The current President, Katie Stevens, spends her time helping others while attending school full-time and lobbying the government, too! She and her family even found the time to send my son a wonderful care package when he was in transplant. This is a great group, doing wonderful things. We are thankful we got to be a part of it, even if it was in error. We wish all of the families in DCO all the best and hope research continues to move forward.

DCO is a loving resource that supports its patients and caregivers with knowledge and a community. There advocacy and support of research will make lives better fir those coping with this rare disease.

I have been inspired by the outreach efforts Dyskeratosis Congenita Outreach achieves. They work to keep the community united, provide care packages to families going through transplant, and work tirelessly to continue the research efforts in the field.

When I read the Facebook posts of moms and dads seeking answers and advice, or when I read the amazing stories of children and young adults affected by DC, who meet such tremendous challenges every day, I am grateful for the dedication of the people involved in Dyskeratosis Congenita Outreach Inc. They are vigilant, always ready to connect parents to resources, to disseminate needed information as soon as it is available, to fundraise, to encourage and affirm, to go out of their way to reassure young people and their families that they are never alone.

DCO has done a tremendous amount of work to connect the individuals impacted by this rare disease and they have worked tirelessly to help educate the medical field.

The individuals and doctors who are a part of this nonprofit give tremendous amount of time and are deeply connected to the families and patients who suffer from Dyskeratosis Congenita. Those who run DCO ask for nothing and provide so much support and strong medical advice that is priceless to us who are affected.

Dyskeratosis Congentia Outreach has dedicated staff searching for a cure for this rare disease. This disease seems to have different effects depending upon the individual and the circumstance's.
I personally Know several that are a part of the outreach progam, Robin and Diane, please reach out to them with either a donation or your help in some other way. Diane and Robin pour there time and energy assisting with charitable events and alerting people like us and around the world about this rare disease and how to recognize it .
If it wasn't for them many may have been lost due to this rare disease.
Please reach out to the Dykeratosis Congentia Outreach with a donation to assist them with there efforts to tame this rare disease that cripples and cause death to young children and young adults in our neighbor hoods and around the world.
Thanks so much for your donation
Randy L Huiras
New Ulm
Minnesota.




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Dyskeratosis Congenita is a disease that not everyone is very educated on.

Until my brother in law and his 3 children were diagnosed with it, I myself did not know very much about this disease. Very often a person talks to someone who have been sick but the doctors are not able to find out what is wrong with them. It could very well be Dyskeratosis Congenita that they have but don't know it.

The volunteers at DCO have helped bridge so many connections in the world of rare, inherited bone marrow disorders. The doctors and resources it makes available to its members shed light on a very dark and daunting topic.

DC Outreach has been instrumental in our lives from the day of diagnosis. Team members have taken time to reach out to me personally and connect me to not only other families but, specialists in the field. They've taught me about studies, camps, and conferences which have influenced us greatly. They are always quick to help and treat us like family. We feel incredibly blessed to know them and have their support on our journey.

A wonderful organization that is working hard to provide education and support on a disease that isn't well known by doctors. Their work is making a real impact on getting the word out and helping those who are diagnosed.

This group is a wonderful support group for patients and family members to find information and support. This group has been helpful to me in finding doctors who have an interest in rare inherited bone marrow failure diseases.

The group had been a pillar of hope and insight into a rare and often difficult to manage process. It brings patients, families and medical professionals together.

This site has helped me in learning more about my disease and how to get help.

DC Outreach provided a link to medical specialists that ultimately saved our son's life. Because of the connections we have made through this group, we know how to take care of our son and have become a part of a wonderful community that feel like family. And now that DC Outreach has published their clinical guidelines, we have a life saving tool that can be shared with doctors all around the world. Thank you DCO!

DCO has been a great help for our family. In outreach and in building lasting relationships that helps us along in the good and 'though' times.

Thank you for all you do.

We found out about DC Outreach Inc. just after our daughter was diagnosed with the disease in September 2013. We immediately felt supported and not alone. We joined the bi-monthly skype chats, joined the face group, and started following them on Twitter. This organization has been so great at sharing information and making sure families feel supported. We may be a small organization but we have really great dedicated people ensuring that information like our newly published clinical guidelines get to families and medical professionals.

The amount o f support and amazing people that I have encountered trying to educate myself and my family about this disease is phenomenal. When we first got the diagnosis I thought "How am I ever going to find out anything about this rare disease or even meet someone who also has this!" Well, a quick search brought me to the DC outreach website and every single person I talk to has been so kind and helpful, and they have put me in touch with other parents that are also going through what our family is going through. I can not thank everyone enough, to know that you are not alone and to have other people to talk to about all of this is the most amazing gift you can be given. If you, someone in your family or someone that you know has been diagnosed with Dyskeratosis Congenita, I highly recommend that they contact people from this site. Everyone is so supportive and informative.

DC touched my life through my best friend from childhood. Her personal experience with her precious son opened up my eyes to a disease that I had never heard of. Through her experience Rachel has become an active member of the Outreach programme and is doing her utmost to educate people in how to try to begin to cope with the news that DC has affected your family. Although on the other side of the world Rachel regularly sends me literature and keeps me up to date with information that should I encounter or hear of anyone in my community facing this illness I can let them know that there will be open arms and support available to them to help them cope. This is an invaluable resource which will hopefully continue for years to come.

My family has been greatly impacted by DC. The information sent out and the camp have helped us understand we are not alone, find knowledgeable doctors, and encourage us. We have seen the great strides that have been achieved. We were greatly blessed by 2 disease free grandchildren which we never thought we would have any at all. This group really reaches out to doctors all over the world who study DC, and make huge steps forward for all people affected and makes the miracles of a good life happen. I thank them so much more than I can say, please support them, Abbi

Over 20 years ago, my husband and brother-in-law were both victims of this disease. Our families with 5 children each, were so alone in our grief. We were told the disease was not very widespread and not much was known about it. Then one of our daughters was diagnosed, then a nephew. We were so alone. A few years ago, two more sons, and two more nephews were diagnosed. So much more was learned about the disease through the years, especially that it is much more widespread than anyone thought. The doctors at the NIH suggested starting a non-profit outreach for others like ourselves and DC OUTREACH was born. The resources, knowledge and support the doctors provide to everyone, all year round, but especially at Camp Sunshine, cannot be measured in words. DC OUTREACH is a lifeline to so many courageous families, now reaching families nationally and internationally. It insures no one will ever be alone again.

DC Outreach truly cares about making a difference in so many people's lives. By providing a strong support network for those diagnosed and their families, DCO serves as an invaluable resource. I support its work in educating the public, organizing retreats, advising, and simply giving hope to those affected.

great organization helps families that are affected by this horrible disease.

DC Outreach are so passionate about their cause, it has given me much hope, strength and wonderful resource of caring people to connect with so living on the other side of the world, really dosnt feel that far. all volunteers I have been in contact with really do care, as they have their own story with DC.
Having fundraised hard to travel to Camp Sunshine in a couple of weeks, which will be a trip of a lifetime in itself, I feel ill be meeting some of my family for the first time.

DC Outreach goes above and beyond serving families affected by DC. They also see the importance of educating the public and giving them ways to help. I plan on supporting DCO for the rest of my life.

I'm very impressed w/this organizaton. They truly are helping those effected by this disease with their research and with their education to the familes and general public as a whole. I have participated in a fundraiser event given by a dear friend who's son has DC. Her son received help and is doing very well and now she's out there becoming a donor, fundraising, educating and helping others. It's a great thing to see!

My stepson was diagnosed with DC in march 2013. I searched the internet to look for an organisation, and immediately dc outreach came up. A well organised and informative site. There is actually just this organisation worldwide that post news, events and stories from families and individuals that deals with this disease. In addition to this doctors, board members and people can connect very easily either through skype conference or email. I am truly amazed by how helpful the doctors along with the board members are to provide us with advice in our situation. We live in europe and without DC outreach, we would not be able to gain any other information other than through doctors here ,that do know very little of this illnes. We can now use the dc outreach as a third part in our situation to confront the doctors and medical staff over here, with the knowlegde from the Dc staff. Unfortunately we could not attend the camp sunshine this year, but we are looking foreward to next.

My friend has Dyskeratosis Congenita, and I have watched her struggle with this disease for years. The outreach organization has helped her immensely - connecting her with specialists and with other people living with DC, as well as allowing her to give back to this community through volunteer work.

This is a great nonprofit, and I'm so glad it exists.

From the day we, Cheryl my wife and I, found out about our grandson’s condition we were made aware of DCOUTREACH. We did not know of it previously but listened to our daughter talk about the “life line” it had turned out to be to her and her family.

Of course Rachel, our daughter, was the recipient of the benefit of the knowledge and resources that this charity offered. As time and circumstances developed Rachel became a more active participant instead of just a recipient. Obviously as her son was affected she remained in contact with individuals, but, knowing our daughter, she wanted to repay the help she received and assist others in any way possible.
I can only be proud of the fact that now she will be “there”, at a difficult time, when someone else receives the life changing news that a loved one is affected by this condition.
We, the affected people, who were previously ignorant, learned that the existence of this body was definite life saver.

I donated items to a DC Outreach fundraiser. But I did so because a little guy in our church community had the terrible condition. Prior to that, I had never even HEARD of DC, which is, unfortunately true of most of the population and, amazingly, most doctors.
We are incredibly lucky and blessed that he is as healthy and happy as he is today and we wish this for ALL those affected with this horrendous disease. But this can only happen with increased awareness by doctors, families, and communities and then appropriate research and response. This is the nonprofit that can accomplish those goals.
Thank you,
Susi Jacobsen

This is a wonderful outreach group for families with DC. There is so much care, love, concern and time that goes into helping/informing people about this particular disease. Helping anyone is wonderful but helping someone who is going through a difficulty is priceless. I hope DC continues to provide their services and may may God bless all workers, volunteers and patients. amen.

When we found out our son had DC it was devastation. I went on the internet to learn more and got so depress because the out look was bad. Most doctors we come in contact with have never heard of this disease. We found out about Camp Sunshine the first year DC Outreach had a meeting. That is where we had learned so much about this disease. DC Outreach open up window for us and now we are not alone. We have met lots of wonderful people who are dealing with the same thing we are. I thank God everyday for DC Outreach. We are not in the dark anymore.

7 years ago we found out our daugther had DC. 2 years later she had a bmt. The doctors told us she could get very old with DC so we never looked for more information because we simply tought she would be okay.
A couple of years later she has big health problems. The doctors over here know so little about the disease they could not tell us what to expect.
Then we started looking for people who now more. And maybe someone we can talk with. And we find out! We came in contact with DCoutreach! And it stanged our life! We know so mutch more right now. We made contact with people who make trough the same thing everyday just like us. We can talk to each other. Even we are planning to go to camp. We starded a fundraiser to get us there.. we get a lot of help from a great woman, one i consider my friend. strange...i have never met her but she feels like my friend.
She helped us so mutch. I can say DCoutreach is great! Unbelievable great!

This is such a great disease advocacy group and family support group! The friends I have met are priceless! I learned about DC Outreach shortly before Camp Sunshine in 2012 and had the opportunity to meet the group at Camp. DC Outreach has some great family chats via Skype, newsletters, and just support knowing that you are not alone. It was because of my experience at Camp that I wanted to help volunteer. I became a board member in 2014. We have some great initiatives going on with a Dyskeratosis Congenita/Telomere Biology Disorder Registry and Clinical Guidelines. I'm excited to be a part of the group!