Resources for individuals with Monosomy 9p.
Resources for those with cleft lip and palate including Cleftline Bears (teddies with cleft stitches), educational materials, grants and scholarships.
Parent-run organization raising awareness and searching out treatments for single gene mutations associated with SYNGAP1.
Nonprofit that brings together professionals and families for research and support.
Nonprofit patient organization providing a physician finder, resources, research and advocacy for people with immune issues.
Federation of voluntary health organizations dedicated to helping people with rare diseases and assisting the organizations that serve them. Committed to the identification, treatment and cure of rare disorders through programs of education, advocacy, research
Research, information and family supports for kids with Smith-Magenis Syndrome.
Information, research and coping strategies for those with RSDSA/ CRPS.
Monthly group offers children and teens who communicate using AAC systems the chance to practice language and social communication within fun, cooperative activities. Participants need not be receiving therapy from Milestone Pediatric. First lesson free to ensure compatibility.
Quarterly meetings with interesting speakers and Facebook support group for parents of children with special needs who do not know the etiology of their child’s condition or illness. Fun activities for children are available while the parents meet.
Dedicated to providing information, connection and support to individuals with one or more extra X or Y chromosomes.