Benefits and Community Support

Benefits

  1. For some cases, you may receive a diagnosis that explains the condition. If the researchers are able to confidently determine the cause of your genetic disorder, we will work with your child’s physician to order clinical genetic testing to confirm the research findings.

  2. After participating in the REACH biobank, you may receive orderly updates about the research’s progress and statistical information available. 

  3. Benefits to others or society: This study will help researchers design better tools for these rare disorders with diagnostic and therapeutic challenges. Your participation allows us to further explore and identify unknown genetic variants and possibly discover new treatments.

Community Support groups

Share your story with others! As a community, we work together and provide support for families affected by rare genetic disorders. We understand that navigating the challenges of a rare genetic disorder can be overwhelming and isolating. We hope these community groups may help you find a community of patients, parents, friends, and family that face the same struggles.

These groups are dedicated to connecting families and individuals affected by rare genetic disorders with resources and support services to help them navigate the healthcare system, connect with other families facing similar challenges, and access the latest research and treatment options.