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2021 Top-Rated Nonprofit

Team Telomere, Inc.

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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases, Health

Mission: Our mission is to provide information and support services to families worldwide affected by Dyskeratosis Congenita & Telomere Biology Disorders, to encourage the medical community's research in finding causes and effective treatments, and to facilitate improved diagnosis by educating medical providers.

Target demographics: patients and families with a dyskeratosis congenita & telomere biology disorder diagnosis

Direct beneficiaries per year: about 200 families from approximately 9 different countries

Geographic areas served: worldwide

Programs: on line support, monthly family chats with medical advisors, educational materials for doctors and patients, newsletters, long weekend sessions at Camp Sunshine in Maine where children attend "camp" and adults attend lectures by the world's leading authorities on Telomere Biology Disorders. Our Facebook Page is: https://www.facebook.com/teamtelomere/ Our Twitter Page is: https://twitter.com/TeamTelomereInc

Community Stories

110 Stories from Volunteers, Donors & Supporters

Client Served

Rating: 5

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.

1

Volunteer

Rating: 5

Over on the other side of the world in New Zealand, is a lonely place to be when your daughter is diagnosed with a rare disorder. When our daughter was diagnosed with Dyskeratosis Congenita in 2015 we found what was then DC Outreach and now Team Telomere. We have attended Camp twice and regularly hop on goo ok attended the monthly family chats. Team Telomere has provided us with support and access to expert medical advice that we so desperately need. We are extremely grateful.

Previous Stories
1

Client Served

Rating: 5

Our daughter was diagnosed with Dykeratosis Congenita at age 4. The sense of community we feel through our connection with Team Telomere has been nothing short of amazing. We live in New Zealand where there is only one or two others with this diagnosis. We have made the trip to the US twice now to attend Team Telomere Family Education Summit at Camp Sunshine where our daughter (now 10) has been able to meet with other children with the same diagnosis. The friendships and continuous support through family chats and online forums is what gets our family through what would otherwise be a very lonely and isolating journey. The sense of belonging that our whole family has felt when we meet with other Team Telomere families is incredible. Team Telomere also helped to facilitate for our daughter to be seen at Boston Children's Hospital where she received laser eye surgery that we couldn't have done back home in NZ. None of this would have been possible without the support of Team Telomere.

3

Professional with expertise in this field

Rating: 5

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

3

Client Served

Rating: 5

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.

3

Client Served

Rating: 5

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.

3

Client Served

Rating: 5

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.

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26

Client Served

Rating: 5

This organization has been an amazing support for my family. The access to information on their website, tweets, and skype sessions has been very informative and reassuring. Without DC Outreach we would be lost with out a map with out knowing which way to go. The families we have met through email and social media have been such a support to us dealing with this disease, we are feeling very grateful to be apart of this group.

2

Board Member

Rating: 5

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!!

2 Jeni C.

Board Member

Rating: 5

This organization is the only organization dedicated to the support of people and their families diagnosed with Telomere Biology Disorders including Dysketatosis Congenita.
They provide many resources including; patient support services, community connection events, education for patients and physicians. They have a medical advisory board comprised of specialists that treat patients with these conditions. They publish clinical treatment guidelines to help patients and physicians make informed treatment decisions. They also fund their own research grants.
Anyone looking for information and resources pertaining to Telomere Biology Disorders should come here first.

Previous Stories
6

Client Served

Rating: 5

We found then, DC Outreach, now Team Telomere shortly after our daughter’s diagnosis of Dyskeratosis Congenita in 2016. We traveled to their patient education summit at Camp Sunshine in Casco, ME. There we forged many lifelong friendships as well as met and learned from the worlds top specialists.
We rely heavily on Team Telomere. To guide us the right physicians, to connect us with families worldwide that share the same illness. They continually pursue funding for research and tireless work to educate the medical community about this rare disease.
They do it all!

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2

Volunteer

Rating: 5

I lost my husband to a telomere disorder that we didn’t know he had until the very end of his life, and I am now volunteering with Team Telomere with the goal of helping others not have to go through what we went through. TT has welcomed me and many others with open arms and provided so much comfort with their mantra that “you will never be alone.” Katie Stevens is an incredible leader and visionary whose dedication and warmth set the tone for the organization. TT provides a beacon of hope for an underfunded disease that is often misdiagnosed (as in our case) and poorly understood. TT is leading the way toward finding better treatments that will benefit patients around the world.

2

Client Served

Rating: 5

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!

2

Board Member

Rating: 5

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.

3

Client Served

Rating: 5

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.

2 dgpearce

Donor

Rating: 5

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!

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4

General Member of the Public

Rating: 5

A wonderful organization working hard internationally to find a cure! They have grown exponentially in the past year due to parents of children suffering from telomere disorders teaming up with the finest doctors in the world. Together they are pushing science forward!

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2

Client Served

Rating: 5

We found this community a few years back when learning of this challenging and scary diagnosis. It has been pivotal in managing this journey. This organization provides emotional support, a sense of community, medical and research information, and keeps you connected with the best doctors. We never feel alone and are grateful each and every day for all the personal and professional connections, it’s been our lifeline.

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3

Client Served

Rating: 5

This organization has given us a home. It is a family of similar yet different experiences. This group offers support, research information, and helps you get connected to the best doctors. I feel less alone dealing with this rare and unpredictable disease after connecting with this organization.

2

General Member of the Public

Rating: 5

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.

2

Board Member

Rating: 5

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.

3

Professional with expertise in this field

Rating: 5

Patients and families with dyskeratosis congenita / telomere biology disorders often experience the fear and isolation of a rare disease diagnosis. For more than a decade, Team Telomere has provided information, hope, and a community for patients and families facing DC/TBDs. They have achieved this through tireless patient advocacy and support; connecting families, physicians, and researcher; funding research; building awareness and knowledge, including comprehensive clinical guidelines and international meetings; collaborating on clinical research projects; and numerous other initiatives. Team Telomere has the passion of a grassroots patient-driven organization, with highly effective leadership and execution. As a physician/researcher in this field, it is a privilege to work with Team Telomere - they are truly improving outcomes and saving lives.

1

General Member of the Public

Rating: 5

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.

1

Board Member

Rating: 5

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.

1 Elisabeth Hammar P.

General Member of the Public

Rating: 5

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!

1

General Member of the Public

Rating: 5

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!

1

Board Member

Rating: 5

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.

5 SurfergirlDC

Volunteer

Rating: 5

They shine a light on a disease that few have heard of. Thanks for all that you do to help bring awareness to Telomere Biology Disorders, to support patients & their families and to help fund research that may someday result in a cure for a disease!

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24

Board Member

Rating: 5

This charity saves lives. It brings together people who have had devastating news about their loved ones with a telomere biology disorder/Dyskeratosis Congenita. It wraps around them providing support, information and knowledge. It supports a worldwide network of parents, doctors and outstanding researchers who support and provide hope. I was so impressed by this amazing group, that I joined as a board member of DC Outreach in 2014. Knowledge is power!!

8 Nicole J.1

Client Served

Rating: 5

My daughter had DC. We lost our Rilee in March of 2017. What Team Telomere has done for us is priceless. I wouldn't have survived without them.

3 Lorlap

General Member of the Public

Rating: 5

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.

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4

Client Served

Rating: 5

Team telomere has been amazing emotional support through phone calls and online and especially though our week at Camp sunshine meeting other families and learning so much from experts. It is a comprehensive resource for information about telomere biology diseases. The clinical guidelines had been invaluable resource to bring to doctor visits and also to recommend to doctors.

4

Client Served

Rating: 5

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!

5 Awilda S.1

Client Served

Rating: 5

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.

5 JRoskell

General Member of the Public

Rating: 5

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.

Previous Stories
5

Client Served

Rating: 5

Team Telomere go above and beyond to support, advocate and care for patients and their families. They are focused on research and finding a cure for this cruel disease. The board members including the medical advisory board are approachable and accessible. My family truly would have been lost without this charity and the community that it strives to keep together so that none of us ever feel alone on this long and difficult journey.

5 Jennifer S.19

Client Served

Rating: 5

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.

5

Client Served

Rating: 5

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

Previous Stories
19

Volunteer

Rating: 5

Dyskeratosis Congenita Outreach provides so many benefits! One of the most beneficial to families is a monthly lifeline, in the form of a chat via Skype with a medical adviser physician. Families register for this chat via the DCOutreach.org website. There is no cost. During this chat, families can ask any question that is on their mind about symptoms, care, information, drugs, 2nd opinions and even hear from other families on the chat regarding their experiences. It is so helpful and comforting. This year they published the first ever Clinical Guidelines book, written by physicians, which discusses recommended treatments for the multitude of symptoms and problems that are present with this disease. Information on getting a copy of this book is available on the website.

2 Noam B.

Client Served

Rating: 5

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

3 Joanna W.

Client Served

Rating: 5

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!

4

General Member of the Public

Rating: 5

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.

5

General Member of the Public

Rating: 5

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!

4 Megan S.5

Client Served

Rating: 5

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.

5

Client Served

Rating: 5

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.

4

General Member of the Public

Rating: 5

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!!

4

Client Served

Rating: 4

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.

4 Rachel L.1

Client Served

Rating: 5

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.

4 Awilda S.

Client Served

Rating: 5

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.

4

Client Served

Rating: 5

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.

3

Client Served

Rating: 5

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.

3 Claire B.2

Client Served

Rating: 5

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

3

Client Served

Rating: 5

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!

3

Client Served

Rating: 5

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.

Previous Stories
23

Client Served

Rating: 5

When my son was diagnosed in 2014, I felt like I had no where to turn. Because DC is so rare, not even our doctors could give us a clear understanding of this disease. After searching on-line, I found DC Outreach. They have helped me understand DC, meet other parents and patients going through the same ordeals, and have provided the latest medical news regarding DC. This shared knowledge helps me better care for my son, and understand what to look out for in the future. Thank you DC Outreach!

3

Client Served

Rating: 5

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

3 verkaiks

Client Served

Rating: 5

Team Telomere has found a beautiful way to reach and show compassion for patients and families with Dyskeratosis Congenita (as well as other Telomere Biology Disorders), and has even found a way to include those of us grieving the loss of our children because of this terrible disease. Whether it’s being together at Camp Sunshine, representing at the Global Genes Summit, providing education or promoting fundraising events, each and every day spent with this organization is another day fighting, another day advocating, another day researching...and it’s a true privilege to be a part of it.

4

Client Served

Rating: 5

Team Telomere (DCO) has been a great help to us. Arranging conference calls with the medical advisory board who provided referrals to doctors my daughter desperately needed. Stepping in during a crisis to obtain travel resources to much needed care. Giving all of us who would likely never meet another family with this rare disorder the opportunity to connect, share and support each other on this difficult journey.

7 Peggy R.1

Client Served

Rating: 5

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.

9

Client Served

Rating: 5

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.

10

Client Served

Rating: 5

If it wasn't for DCO we would have never been able to go to Camp Sunshine where we were introduced to our son's transplant doctor. DCO has promoted research and education for Dyskeratosis Congenita that has been life saving for our family and many other families. Thank you DCO!

Previous Stories
26

Client Served

Rating: 5

The special bond we have made with families through DC Outreach has been priceless! These families have been with us all along giving us encouragement as our son went through his bone marrow transplant 2 years ago. Through DC Outreach we found out about Camp Sunshine and that is where we met our son's transplant doctor that has been with us from that very first contact at camp and that has brought us so much hope! By not having to deal with this disease alone and having the support of all the other families we have gotten to know has made this journey a lot more bearable!

10

Client Served

Rating: 5

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.

Previous Stories
22

Board Member

Rating: 5

DC Outreach has provided access to medical resources and emotional support to families impacted by this extremely rare disease. This grass-roots organization has a tremendous impact on those struggling through a profoundly difficult & rare disease.

8

Client Served

Rating: 5

With DCO we got a new family. Everyone we met is in our hart. DCO helpt us trough the hardest time in our life! We gaint a life long friendship. Without DCO we were lost in our country because there is just not enough knowledge here. Thanks for beiing there for us.

9

General Member of the Public

Rating: 5

My son Max was diagnosed with DKC at the age of 13 months old, he then sadly passed away aged 15 months after contracting PCP Pneumonia due to severely low immune system. He had such severe bone marrow failure the Drs said that it's normally seen in an older adult. He sadly had all of the traits of DKC in an aggressive form and fought as hard as he could be he always had a big smile on his face. I have been shown a great deal of support from this organisation, especially from Katie. I hope many other parents, children and family get the support they need and I'm sure this organisation will help many more ❤️ Thank you!

8

Client Served

Rating: 5

DCO is invaluable to this rare disease community! The dedicated volunteers have helped to provide crucial, life-saving information to patients and care givers. The organization has also connected a group of people from around the globe to share vital data, research, and emotional support. Friendships made within the DCO community online and especially at the biannual camp (provided/organized by DCO), have made a big difference in coping with the ups and downs of this rare disease, as well. DCO is the BEST!!

8

Client Served

Rating: 5

They helped connect me with doctors that saved my son's life. This organization is priceless.

7

Board Member

Rating: 5

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.

5 Katie162

Board Member

Rating: 5

I can say without a doubt, I still have my firstborn because of DCO! They helped me reach physicians that specialize in this disease. It created relationships that continue for my husband and I as caregivers, for my son as the patient, and for my other children as the siblings. No one feels alone or lost with DCO.
I felt so passionately about the mission I volunteered to help continue it, and can proudly say that both on the outside and inside, DCO is an amazing NPO, that is making a big difference.

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8

Board Member

Rating: 5

DCO has been absolutely essential in saving my own child's life. The board members and medical team that make up this group are instrumental in making sure information and connections are made to better the patient and families lives. I cannot say enough good about DCO. They make the world a better place. After our first camp I was so inspired I had to be a part of it too.

8 gailbhb

Donor

Rating: 5

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.

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15

Client Served

Rating: 5

How do you explain a bone marrow failure cancer-causing genetic disorder in what started out to be a casual conversation about a loved one? Where can you connect with the parents and family and friends of other "one in one million" loved ones who are seeking answers to the same questions? This website connects those affected by DC with those who seek to effect change. It has been an invaluable resource for my family.

8

General Member of the Public

Rating: 5

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.

11

Volunteer

Rating: 5

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.

11

Donor

Rating: 5

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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10

General Member of the Public

Rating: 5

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.

10

Board Member

Rating: 5

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.

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18

Volunteer

Rating: 5

The outreach and support group helps connect families affected by rare, telomere biology disorders. The volunteers who run the group provide family support meetings, sponsor family retreats, and support physicians involved in research. DC Outreach, Inc.'s Facebook page allows families the opportunity to ask questions questions and find answers not readily available in conventional media.

Core tenants of the group are education and advocacy and it recently published the disease's seminal treatment resource to aid families and physicians in managing this complex condition.

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