The following resources are available for parents of medically complex children.
Neuroimmune Foundation is a 501(c)(3) non-profit organization dedicated to dramatically accelerating physician education of PANS, PANDAS, encephalitis, and related conditions; significantly improving outcomes for individuals impacted by these disorders through prompt diagnosis and insurance based care; providing meaningful support to families during their darkest days; catalyzing research at an unprecedented pace that will ultimately lead to lasting remission for all individuals impacted by these disorders.
MitoAction’s mission is to improve the quality of life for children, adults, and families living with mitochondrial disease through support, education, outreach, advocacy, clinical research initiatives and by granting wishes for children affected by mitochondrial disease. We strive to make a measurable impact in the lives of those who are affected by mitochondrial disease.
The Ehlers-Danlos Society is dedicated to advancing and accelerating research and education in Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). We support the development of effective and equitable EDS and HSD therapies and work collaboratively to improve the lives of individuals affected by EDS and HSD.
The mission of the OI Foundation is to improve the quality of life for those living with osteogenesis imperfecta through research, education, awareness, and mutual support.
The Autoimmune Association leads the fight against autoimmune disease by collaborating to improve healthcare, advance research, and support the community through every step of the journey.
Since 1983, NORD has been a national steward and a steadfast partner helping those who battle and care for rare disease feel seen, heard, supported and connected. We’re a full-service, mission-driven nonprofit reimagining a future where every person with a rare disease, and their families live their best lives.