Chromosome 18 Registry And Research Society
Rating: 5 stars 33 33 reviews 505
7155 Oakridge Drive San Antonio TX 78229 USA
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.
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Reviews for Chromosome 18 Registry And Research Society
With so few people affected with Chromosome 18 issues it is so wonderful that there is an organization that is dedicated to improving the lives of anyone with a Chromosome 18 issue. They do ground breaking research in areas that no one else is doing research and they strive to help our loved ones live healthy, happy and full lives.
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!
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
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.
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
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.
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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.
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.
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!
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.