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2020 Top-Rated Nonprofit

Chromosome 18 Registry and Research Society

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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases Research, Health, Specifically Named Diseases Research

Mission: The Chromosome 18 Registry and Research Society, founded in 1990, is a lay advocacy organization composed primarily of the parents of children with one of the chromosome 18 abnormalities. We are also proud to count among our members, affected individuals, extended family members and professionals. Membership is open to any interested person. Our work is supported by memberships and donations from individuals and charitable organizations. We have met the strict criteria for fiscal responsibility set by the Combined Federal Campaign. We provide: Newsletters, Annual Conference, Parent Network, Syndrome support groups, Regional support groups, Education, Syndrome information, Public advocacy. We fund research, including clinical research.

Programs: Dissemination of information regarding chromosome abnormalities to physicians and families, and funding research regarding chromosome 18 abnormalities

Community Stories

87 Stories from Volunteers, Donors & Supporters

Client Served

Rating: 5

We found out our daughter had Chromosome 18q- in 2013. None of the doctors knew much about it at all, and we were so lost. We found the C18 Registry and Research Society and gained a new family along with invaluable information to help the doctors help our daughter. The research is ongoing and always helping so many families stay on top of their childrens' health and well-being, and it's a wealth of information for the doctors we all see. I don't know where we'd be without the help of the Registry and the wonderful doctors who work there to help our families.

Sally S.4

General Member of the Public

Rating: 5

While their mission is to build community, expand education, and advance research, they also provide hope and awareness.

Volunteer

Rating: 5

Interning with Chromosome 18 was such an amazing and valuable experience! The staff was more than kind and accepting towards all interns, volunteers, and donors, and I got to see firsthand how much they care for their Chromosome 18 families. It was an honor to be part of such as impactful organization and to support Chromosome 18's events.

Volunteer

Rating: 5

While working over the summer with Chromosome 18 I learned the importance of detail work that goes into an efficient non-profit. The work atmosphere was always positive and the I could tell that the staff really cared for all interns and volunteers. It was an honor being part of the Chromosome 18 team and aiding in getting connected with / getting important information to the many ways families the organization helps across the country and world!

Volunteer

Rating: 5

If you are looking to get your foot in the nonprofit world, this is definitely the place for you! Great training, stress free office setting(currently remote) and very rewarding work.

Runyu L.

Volunteer

Rating: 5

It is such a great and wonderful experience to work with Chromosome 18. The manager was patient to all volunteers and workers. And the organization has great goals. What they do is meaningful. Hope more people would like to join them and help people in need.

Volunteer

Rating: 5

I interned here over the summer of 2020 and wow- what an amazing group of people to work with! The team at C18 works tirelessly to help families in need, especially during this crazy pandemic. Their hard work and caring nature has proven their amazing ability to help families in need.

Alexis G.4

Volunteer

Rating: 5

I have volunteered at some of the Chromosome 18 conferences. I’ve helped in the office. I was honored and blessed to work with some of the kids at last years conference. This group is exceptional. The research they do and the information that they provide helps so many, and provides them with the tools to live life to the fullest.

Previous Stories

Volunteer

Rating: 5

This nonprofit is awesome! Researching and supplying information to help people and their families understand more about Chromosome 18. I have met and spent time with this organizations leaders and some of the volunteers. They love what they do and are making a huge difference in people’s lives!!

Jessica Thea R.

Volunteer

Rating: 5

The Registry became an instant family and the greatest resource for us when we got my daughter's diagnosis. It's been so important and beneficial for us to connect with others through the Registry that I became a regional coordinator to help facilitate that benefit to others! I don't know where we would be without the Chromosome 18 Registry and Research Society!

Board Member

Rating: 5

Impressive organization started by a mom who couldn't find what she needed to care for her child, so she built it herself. Celebrating 30 years of making a difference for all children impacted by chromosome 18 abnormalities.

Mark B.11

Donor

Rating: 5

The work done and help provided by the C-18 Registry and Research Society is immeasurable.
Government loves to fund the big charities, but it's the hard work done by a small group of dedicated people that brings the necessary funding in to provide the help for those in need and the research required to find a cure.

Volunteer

Rating: 5

This is a great organization and it is wonderful to see how much they support and encourage the very special and precious individuals and their families. From conducting research to improve the quality of their lives to providing education to them, their families and their medical care givers. Chromosome 18, thank you for all you do!

nealeparker

Donor

Rating: 5

Proud to be helping our Chromosome 18 Families during this crisis and excited of everything the organization is accomplishing. The dedicated team is an inspiration every day in the new and helpful ways of being able to serve our members. Thank You to you everybody that helps so much every day. Congratulations on your 30th Anniversary in 2020.

Previous Stories

Donor

Rating: 5

Chromosome 18 is supported by Cynthia and myself because we really believe the organization has a positive impact on so many people. Apart from bringing families together, the help and support that is so important to see the child have a better quality of life. In addition, the Chromosome 18 Clinical Research Center that improves lives every day is very worthwhile supporting and as the only dedicated research center in the World makes the involvement even more valuable.

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Professional with expertise in this field

Rating: 5

Chromosome 18 Registry is doing more to help families during the Covid-19 crisis than ever before and we thank them for everything they do.

Volunteer

Rating: 5

Chromosome 28 is a wonderful organization that is truly dedicated to their mission. I have never seen harder working people than those at Chromosome 18. One of the best nonprofits to work with.

Lorie S.

Client Served

Rating: 5

This Registry started by a fellow Mom, now a top geneticist, has done so very much for our exceedingly rare children. And in turn, this amazing organization has inspired other countries to imitate it. Our beloved registry has raised the world's awareness of genetic anomalies of the 18th Chromosome that were previously unrecognized and unaided. Through their unflagging efforts and research, knowledge is being gained to help our children live longer and better lives, to make strides, reach goals and attain dreams that would have gone unrealized.

Allison Cohen De P.

Donor

Rating: 5

What a great organization! They have top notch fundraising, use their funds extremely well, and engage effectively with their community.

Dave90

Donor

Rating: 5

This organization has greatly served the needs of families with individuals affected with these rare conditions. The research that it supports is truly on the leading edge. The sense of community that has been created is unmatched. Finally, the education of families and physicians with practical informal to help manage these conditions cannot be found anywhere else. I highly recommend this organization.

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1

Donor

Rating: 5

Amazing group of people with an ambitious mission to make chromosome conditions treatable. A fantastic resource for new parents and the medical community.

Donor

Rating: 5

Our dreams and hopes for David’s future became attainable with the help of this organization. We were NOT alone as the medical community had told us, we are part of a large tribe of support! Ongoing research helps us plan for the future and we love to see the newly diagnosed families benefit from our support of this research.

Helene Parsons B.

Volunteer

Rating: 5

I am amazed at the story of how Chromosome 18 research was founded. I have volunteered several times for conferences and done a walk in San Antonio. This year the conference is in Colorado where I live and I will be helping out there.
The dedication of the employees, volunteers and families with affected children is heartwarming ❤️

Volunteer

Rating: 5

I have been a part of the Chromosome 18 family for 2 years now, and I am so happy to be part of an organization that is dedicated to improving the lives of so many individuals around the world. Chromosome 18 works to support families through sharing resources, hosting events, and funding essential research on chromosome 18 conditions.

Previous Stories

Volunteer

Rating: 5

Chromosome 18 is an amazing organization that connects families affected by chromosome 18 conditions with resources and support. Chromosome 18 is the only organization in the world doing this work, and they serve an incredibly important role for our families. I am honored to be a part of this organization!

Volunteer

Rating: 5

I have been a part of this organization for almost 2 years now. Their dedication to their members and families is outstanding!The staff and volunteers are all such caring people. I am honored to be a part of such a wonderful organization that is always striving to be better. It is truly amazing to see the amount of lives that Chromosome 18 has changed with their research!

Previous Stories

Volunteer

Rating: 5

Chromosome 18 Registry and Research Society is an incredible nonprofit organization! The research they are conducting is beyond words. Everyone I have met from Chromosome 18 are all compassionate, caring, and determined to help in every way possible. It is an honor to be a part of this wonderful organization. I highly recommend touring their research facility. It is so amazing to see first hand what they are working on!

Board Member

Rating: 5

My son was diagnosed with a C18 deletion at 19 months. The Chromosome 18 Registry and Research Society has been a lifesaver for us--literally. When my son went into congestive heart failure at age 3.5, we knew from the other parents what needed to be done to treat him. He's now nearly 14, and hasn't been under a cardiologist's care for 9 years! We love the Registry!

Client Served

Rating: 5

I cannot even begin to describe what a great organization this is. They have helped our family and so many families so much.

What this small group gets done with the small budget they have is truly amazing. I can only imagine what could be achieved if they were able to get more funding for more programs and research. Not only would people with Chromosome 18 conditions benefit, but much of their work is applicable to other general conditions as well.

From the staff, to the volunteers to the other families - thank you for your support over the years!

Jeff

Previous Stories

Client Served

Rating: 5

Imagine spending 10 weeks in the Neonatal Intensive Care Unit with your newborn daughter and when you finally get to take her home - you find out she has a very rare chromosome disorder called Tetrasomy 18p. As you try to understand what this means, you find a magical place on the Internet called the Chromosome 18 Registry.

Here, you find a place dedicated to research and education of this disorder. It is literally a God send.

A few days later, you meet with one of the top geneticists in the Midwest area. This is all this man does - study rare disorders like this - and it turns out, this condition is so rare, even he has never heard of it. He produces some literature on the subject - and low and behold, he has gotten his information from the same magical place - the C18 Registry.

There are not enough words to explain how much this organization means to us and the other families who are members. The work they do makes a profound difference in the lives of those afflicted with the disorder as well as us parents that are caring for these children.

Of course, the rarer a condition is, the harder it is to get funding. They are a small but very determined group - but money is always a struggle.

If you ever doubt that a single person can change lives - then I encourage you to read the story (link below) of the person that founded this group and why she started it. (Also, be sure to check out her Resume - note she went and earned her PhD so she could research her daughter’s disorder. Wow, that is dedication! )

http://www.chromosome18.org/WhoWeAre/GetToKnowUs/MeetOurBoard/MeetOurBoard/Executives/JannineDeMarsCody/tabid/246/Default.aspx

Thanks for taking the time to read all this.
Jeff

Katie B.8

Board Member

Rating: 5

This charity has been a life saver for my daughter and the whole family. When she was first diagnosed with 18q- we were given outdated information that only showed the most affected individuals. Not one doctor in our area knew about her syndrome. We called the Registry and I talked with Dr. Cody herself for a long time getting up to date information, research and support. We attended our first summer family conference when my daughter was 3 months old and have made trying to attend a priority ever since.
Because of all the information and support that we got right away, I started volunteering with this great charity. I have volunteered in some capacity for almost 19 years.

General Member of the Public

Rating: 5

Chromosome 18 Registry was their for my family and I when our daughter Charlotte was diagnosed. They have continued to be a major educator and central meeting spot for families to seek solace and hope. A great Non Profit!

liz0625

Board Member

Rating: 5

As a parent of a child with an incredibly rare disease I just can’t say enough about chromosome 18 registry and research society. Just when you think there is no one else that can imagine what you’re going through your introduced to so many families that can support you and help you. I found this organization so incredible that I went from a client to now an active board member and I want to make my positive experience the same sort of experience that others can have. My daughter Charlotte was born with Tetrasomy 18p, a very rare genetic anomaly. But I have found such a wonderful extended family within the Chromosome 18 Registry group. Enough that I now fully support the organization through being a board member.

Previous Stories

Client Served

Rating: 5

A wonderful organization that supports all individuals that are affected in any way by a Chromosome 18 abnormalities.

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General Member of the Public

Rating: 5

Neale does a great job for this organization and has helped bring attention to much needed society

Volunteer

Rating: 5

Chromosome 18 Registry and Research Society is an amazing organization. If you haven't already you should read their story on how they got started. So much love and determination goes into this research. I was honored to be able to volunteer at the 2017 conference in Illinois and interact with the affected individuals and their families. Such a wonderful down to earth and appreciative group of people.
Thank you Neale Parker for inviting me to volunteer. I hope to be able to do this again!
Helene Benbrook

Emi B.

Volunteer

Rating: 5

Chromosome 18 is an amazing organization that continually works to improve the lives of its members. Chromosome 18 provides support networks, events, and resources to families affected by chromosome 18 conditions. They also support the only research center in the world dedicated to chromosome 18 conditions. I am incredibly proud to support this organization and love being able to help our families!

Agnes E.

Volunteer

Rating: 5

Chromosome 18 Registry & Research Society is an incredible non-profit organization. They have helped so many people around the world for 26 years and continue to do so. I am glad that I get to be a part of this amazing organization.

Regan K.

Volunteer

Rating: 5

Chromosome 18 Registry and Research Society is an amazing, compassionate, and dedicated non-profit. Everyone I have met is focused on the same mission, helping those affected by Chromosome 18 conditions. Coming together like a tight-knit family, the registry's members reach out to another when they need help and advice on next steps to take. Working at the non-profit has surrounded and introduced me to a community of philanthropy, positivity, and thoughtfulness. I can't imagine a better family to be a part of.

Volunteer

Rating: 5

Chromosome 18 is an inspirational organization and I am glad to get to be a part of it. The amount of progress that Chromosome 18 alone has made in the field of chromosomal research is impeccable, and experiencing the warmness of members first-hand has been a great experience.

Andrea D.2

Volunteer

Rating: 5

Everyone at Chromosome 18 is very welcoming and loving and caring. They have all become like a family to me. I have never been more proud to be a part of such a wonderful organization. They're doing so many great things for so many people and it's an amazing thing to be involved in.

Diane195

General Member of the Public

Rating: 5

I've connected with families that have the same abnormalities very helpful

1 Lee_59

General Member of the Public

Rating: 5

A fabulous organization made up of amazing people. We were welcomed like family and the service the chromosome 18 registry provides to those who need it is priceless. Thank you so much to the amazing team and all the volunteers.

1

Client Served

Rating: 5

The Chromosome 18 Society has provided great support and information since the birth of our daughter in 2011 and her diagnosis of trisomy 18. I have connected online with the Society and in Australia with the small number of families affected by chromosome 18 anomalies. I look forward to news of their conference in the USA and also the Australian conference in Australia held every 2 years. Fabulous support organisation.

1

Client Served

Rating: 5

From the first weeks of our son's life to present day, the Chromosome 18 Registry and Research Society has helped us cope with his diagnosis. I've been proud to fund raise for the organization knowing they run lean in their organization, focus the money spent on supporting families and research at the Univ. of Texas San Antonio Health Science Center's Chromosome 18 Clinical Research Center. Amazing organization well worth every penny of support.

2

General Member of the Public

Rating: 5

What a wonderful organization! What makes it so special is everyone is so committed to doing whatever it takes to make a difference. I had an opportunity to meet so many precious individuals who are affected by this rare disorder. They truly touched my heart!

My thanks to everyone who supports the Chromosome 18 Registry and Research Society!

3

Board Member

Rating: 5

We have been members since our daughter's diagnosis of Tetrasomy 18p in 2001. The Chromosome 18 Registry & Research Society offers family support, education & medical research for chromosome 18 conditions. We look forward to the annual family conference each year. This organization has made a difference in our lives, the life of our affected daughter & is part of our family.

1

Donor

Rating: 5

The most remarkable result is the bonding of siblings of the affected persons over the years. They have been affected also.

1

Client Served

Rating: 5

Miraculously, i found a texas telephone number for the C18 reg. & research society 24 years ago when my son was born & diagnosed as having Chromosome18p-. This was pre- internet and nothing cd be found on the topic except for grim faces expressing grim outlooks based on few to no facts. Janine Cody founder of the c18 society answered the phone that day and changed our lives in one short phone call. herself a mother of a child with a partial 18 deletion, she knew her facts, and what blew my mind, was that she was very " unpaniked " about it all. Knowledge erases fear. Support nurtures growth. A sense of belonging brings joy. When our son was a baby & toddler we traveled far to attend the annual conferences. We loved it. It felt like family in the best sense of the word, chosen by birth not by other means, but a family who comes together to share and to learn and to enjoy. My son is a fine, happy adult now, no longer living at home, yet i still follow and support the Chromosome 18 registry in whatever way I can. I urge anyone with the means or desire to support a truly worthy non- profit organization to do so as well. Your help will serve to enable a foundation that not only directly and personally benefits children and their families but also contributes to scientific research that will increase our knowledge and understanding of genetics, a vital area of study that targets the greater good at home and in the world.

1

Professional with expertise in this field

Rating: 5

An incredibly dedicated team of scientists, physicians and support staff searching for cause, opportunities for life improvement and of course, cure or prevention. All the while they have created a network of care and support for individuals and families affected. Truly remarkable work.

1 crfugitt

Client Served

Rating: 5

The Chromosome 18 Registry and Research Society has been a vital part of our lives since our daughter Sarah was first diagnosed with a deletion on the q arm of the 18th chromosome when she was an infant. Shortly after that diagnosis, in 1992, we became aware of the Registry and quickly became involved to learn more about our daughter's condition and to try to determine what this meant for her life. Since that time, we have benefitted from the work of all of the wonderful people involved in this nonprofit - Sarah has participated in the Registry's research and we have had the pleasure of getting to know so many other families facing the same challenges we have had to face. The Registry has helped families from all over the world who have loved ones with a chromosome 18 condition and the research they have done into genes on the 18th chromosome helps not only those with a chromsome 18 condition, but extends to genetic disorders in general. We are so grateful for this wonderful organization. - The Fugitt Family

Previous Stories
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Client Served

Rating: 5

We discovered the Chromosome 18 Registry & Research Society after our daughter was diagnosed with Chromosome 18Q- at 9 months. Sarah is now 24 years old. The registry has been a life-saver in so many ways for our family. Through this group, with its vast network of people affected with chromosome 18 disorders all over the world, we are able to connect with other individuals and families who share our daughter's diagnosis so that we know we're not alone; we can share common issues and experiences. The Registry is constantly doing research, in which Sarah has participated, so that we are always learning about genetics in general and chromosome 18 issues in particular. As a group solely committed to issues involving chromosome 18, the Chromosome 18 Registry & Research Society is a vital resource for us and so many others around the globe who have been affected by abnormalities of the 18th chromosome. - Sarah Fugitt and family

2

Client Served

Rating: 5

I am the 3rd oldest tetrasomy 18p known in the world! The chromosome 18 registry has helped me find the other 2 and I met one at a conference! I rely on the registry to help me find more people like me. The registry has an affiliation with a research center. Through this connection several papers have been published in peer reviewed medical journals which have helped my local medical team improve my quality of life. My care providers go to conferences with me. We all get the latest information and a great travel experience with others who really understand our journey.

1 Todd45

Professional with expertise in this field

Rating: 5

This nonprofit works on a shoestring and is very up front about that. It is making amazing strides in a small subset of abnormalities. Great organization and getting better. The people involved are awesome and want to get the word out concerning chromosomal abnormalities.

3 Patricia154

Client Served

Rating: 5

My daughter has 18p- syndrome> She is now 36 years old. When we got her diagnosis there was no information to be had only bleak pictures and a lot of "we don't know" We started the process of wading through several doctors and special education by trial and error and making, hopefully, the best decisions we could at the time. We went on like this for years. We found out years later about the 18 Chromosome registry, but by then I thought been there done that what could they help us with now? Well now I understand how wrong I was! My daughter and I attended our first conference this year and I was overwhelmed by the amount of information and the comradery between the staff and families It made me cry thinking how alone I felt at times. But now I know their is always learning to be had and shared and friendships to be made. I'm so thankful for this organization that new families don't have to do this alone and now I don't either. I celebrate my daughter's uniqueness and 18 Chromosome Registry for sharing that uniqueness with the world!

2 Julie226

Donor

Rating: 5

Once our diagnosis was given doctors couldn't give us much info. We sere he'd the internet and got connected. To the chromosome 18 website! Right away we felt to ease because we were able to see what other kids with this abnormality had and we could compare our daughter and try to figure out the next step for us. Our individual group 18 P minus has been a godsend to our family! We have made connections with others and have been able to talk in a private setting with other parents to see where they are and where they been and use that knowledge to help us navigate the road in front of us!

2

Volunteer

Rating: 5

I have been involved with the chromosome 18 registry for many of year. This organization is more than just help it's my family. I always enjoy reconnecting with my friends and doing activities with them. I just wanted to say thank to the chromosome 18 registry for allowing us to be who we are. Thanks

2 Writer

General Member of the Public

Rating: 5

Meeting people and gaining access to valuable information through the Chromosome 18 Registry and Research Society has been such a blessing for our family. After 13 years without a diagnosis, we finally found out our daughter has Chromosome 18 p-. We didn't know what that meant but thanks to the registry, we have gained so much valuable information and have made connections with other parents that will hopefully last a lifetime. This summer we attended our first, but definitely not last, annual family conference. It was an amazing experience for our entire family and we can't wait to go to another one. Without the Chromosome 18 Registry and Research Society we would still feel lost and helpless. Now we have hope for what the future holds for our daughter.

2

Volunteer

Rating: 5

My son was diagnosed 18 years ago with 18q deletion. The doctors could tell us very little information on his diagnosis. I am so very thankful for the registry that helps support research in giving us answers & hope that we so desperately need. I am also grateful for the wonderful support we receive from other registry families

1

Client Served

Rating: 5

I discovered the Chromosome 18 Registry and Research Society in 1999 when my daughter was born with a chromosome 18 abnormality. The doctors and geneticist gave us a very bleak outlook for her life. The registry gave us a place to ask questions and vent about things we were going through with our children. It was very helpful to be able to ask other parents about behaviors and medical issues we were going through and they had already been through. The best thing is the annual conference. These are very rare abnormalities so to be able to meet other children and to be able to talk to other parents in person is awesome. They also do research on the chromosome 18 abnormalities which helps us and lets us know what issues to look out for. After talking with and meeting the doctors and parents from the Registry they gave us hope! Today my daughter is a 16 year old who loves life.

2

Client Served

Rating: 5

When we were scared and lost, we found The Registry. We are first time parents and our daughter was diagnosed with a rare chromosome abnormality. None of the doctors could tell us anything about it or what to expect. Thanks to The Registry, we've gotten good information, thorough information and information that makes us hopeful, not hopeless. We've been fortunate enough to attend a few of the family conferences and have made many friends with people who understand us and see more similarities than differences.

2

Client Served

Rating: 5

We joined the Registry in 2007, after our son was diagnosed with 18q-. Over the last 8 years we have been able to connect with so many other families that share our concerns. The Registry has enabled us to learn more about his disability and they were the first ones we turned to for information. This year I experienced my first Chromosome 18 Registry Conference and it was so amazing to be with such a large group of people who understood what my daily life is like. The Chromosome 18 Registry has truly been a blessing to our family.

2

Donor

Rating: 5

This group does amazing things with the funds and provides a safe and supportive environment for families and loved ones. It strives to make sure none of us feel alone on this journey and are always looking to improve the lives on the people affected by chromosome 18 changes. My family will be forever grateful for the staff and families!

2 Kim_192

Client Served

Rating: 5

It is very hard to find someone in Alaska with knowledge about 18p deletion syndrome.Love this nonprofit! Its been an amazing wealth of information on 18p deletion syndrome. The facebook page is also very helpful with getting information and feedback from other parents and adults with 18p. Looking forward to participated in one of their many events in the future.

1

Client Served

Rating: 5

The Chromosome 18 Registry has given has valuable tools and information to help our son reach his greatest potential. Without it we would feel very alone.

1 Laura255

Client Served

Rating: 5

There isn't enough time in the day or space in this little box to tell you all the amazing things the registry has done for me and my family. First and foremost, the family registry is a lifesaver. It connects hundreds of families who have a child or other family member who is affected with a chromosome 18 disorder. When you find out your child has this extremely rare genetic disorder, a disorder most doctors know nothing about you feel absolutely alone and isolated. The registry is a lifeline. I have received an unprecedented amount of support from other parents like me and I don't know if I would have gotten through the early years without them. I consider them my extended family all over the world. The Research Society is the only place in the world doing research on my daughters disorder. We have joined the clinical trial so that we can do our part to help. I am grateful for all the work that they do. My daughter will have a better life and a better future because of it.

2

Volunteer

Rating: 5

Our lives changed in 1999 when my daughter found The Chromosome 18 Registry and Research Society. She was carrying out research into the rare chromosome disorder which affects her, and discovered that there was a conference taking place 6 weeks later in San Antonio. It was a huge challenge to get there from Scotland, but it was worth every penny to find the place where Kathryn at last felt not only accepted, but celebrated. Attending the annual conference was very important to her, as it gave her the strength and self esteem boost she needed for the rest of her year at college. We learned what we should have checked, and ways to advocate for her, and how she could advocate for herself. It's such an important part of our lives that we helped set up the European organisation so that other affected families could gain access to our worldwide family for support and knowledge. Each year our affected children and adults learn laugh and play together, and we see them grow before our eyes at conference.

1 Fiona P.

General Member of the Public

Rating: 5

So grateful for finding this group as I have found and learnt lots of things. I have 18q at break point 22.3 and so do two of my children, so for me to do this is an achievement and hope it's ok. I have found friends and lots of info here, so thank you.

3 Susan402

Client Served

Rating: 5

When my daughter was born early we were not too concerned. Then, on day four of live we were given her diagnosis (her first of many) of Chromosome 18 p deletion syndrome. The specialist had not heard of it. This is very scary. Thankfully we had friends who found The Registry for us online. This was before FaceBook. The Registry offered information and vital support that have helped my daughter and whole family on this part of our journey. Without The Registry, we would be lost and alone. The Registry is our family. They help us inform doctors, therapists, educators, family, and friends. We are grateful and proud to be part of The Registry.

2

Client Served

Rating: 5

We were so lost when we got our daughter's diagnosis of 18q-, and the doctors that gave us the diagnosis were frank in that they didn't know a whole lot about it, so they could only give us the worst case scenario.
I'm grateful everyday we found The Chromosome 18 Registry because they gave us something we had very little of at the time, hope.
Connecting with other parents who had gone on the same road as us was priceless. Attending the conferences has been indescribable. The information we've obtained there has been invaluable and given us amazing tools in giving our daughter as normal of a life as possible.
I could never imagine a better organization as The Chromosome 18 Registry and Research Society, and my family is forever indebted to them for all they've done for us.

1

Client Served

Rating: 5

When our daughter was diagnosed the only people that really knew anything
About her genetic anomaly was the Chromosome 18 Registy and Research organization.
There we are not alone. There we get to meet other families who live with this on a day to day
Basis as we do. And as for treatments...., the only way there will ever be a treatment for the syndrome
My daughter has will come from the Chromodome 18 Registry and Research Organization. We went to
The conference this year and it was supportive and informative as well as fun. Literally these people
Are some of the only people that can empathize how you are feeling. An excellent organization.

1

Volunteer

Rating: 5

I have been a volunteer for this organization for 7 years now and it gets better every year!

Every summer, they have a family conference that is nothing short of awesome! We live in a time of high technology this and high definition that, but there is no technology out there that compares to the friendships you make and the personal one on one relationships that you get to witness one on one!

I still remember being blown away watching the siblings in the first 2 hours of my first conference knowing that they are gonna grow up to be some of the most empathetic and compassionate adults you would ever want to know and after 7 years, I am here to tell you that I was correct!!!