Resource Directory
(Project under construction!)

Find Support Groups, Patient Advocacy Organizations, and more through this directory created by our 2026 WIGCA volunteers: Alexandrea, Maddie, and Ila!

1p36 deletion syndrome

• https://www.1p36dsa.org/

  • This site contains information on 1p36 deletion syndrome, including a section of FAQs. They also have links to their social media pages, a link to a Facebook support group that one can join, and an annual conference (as well as recordings of their previous conferences).

• https://rarediseases.info.nih.gov/diseases/6082/chromosome-1p36-deletion-syndrome

  • User-friendly website for learning about the condition

1q21.1 Deletion syndrome

• https://www.simonssearchlight.org/research/what-we-study/1q21-1-deletions/

  • This page contains a "gene guide" on 1q21.1 deletion syndrome including symptoms, causes, and treatments. It also contains a link to a Facebook support group, stories from other families, and "quarterly reports" on the syndrome

• https://rarediseases.info.nih.gov/diseases/10813/x

  • User-friendly website with information on the condition

2q37 Deletion syndrome

5q Deletion syndrome

Distal Muscular Dystrophy

Duchenne Muscular Dystrophy

Dravet syndrome

• https://www.mda.org/disease/distal-myopathies

  • This resource lists different types of Distal Myopathies, signs and symptoms, the tests used to diagnose, the causes and inheritance patterns, medical management, care centers, and support groups

• https://www.mda.org/disease/duchenne-muscular-dystrophy

  • This resource lists signs and symptoms, the tests used to diagnose, the causes and inheritance patterns, medical management, care centers, and support groups for this disorder

• https://dravetfoundation.org/start-here/families-caregivers/

  • This website lists information about feature of Dravet syndrome, diagnosis and treatment guidelines, genetic mechanisms, comorbidities, clinical trials, treating physicians, and patient stories