The following organizations provide educational resources and support research to help people affected by rare and serious disorders.
Global Genes is a leading rare disease advocacy organization dedicated to eliminate the challenges of rare diseases by spreading awareness, and providing education and resources to impact affected patients and their families.
The MLD Foundation serves families throughout the world affected by metachromatic leukodystrophy (MLD). The Foundation provides information about the condition, videos explaining the disease and promoting awareness, physician contacts, clinical trial information, research and education.
The National MPS Society aims to support research, help families of patients with MPS and increase public and professional awareness.
NORD provides advocacy, education and other services to improve the lives of all people affected by rare diseases.
RareConnect is an initiative by EURORDIS (European Rare Disease Organisation) and National Organization for Rare Disorders (NORD) that provides a safe space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources. The RareConnect website has an online community for patients and families with Sanfilippo Syndrome.
The Rare Disease United Foundation (RDUF) is a non-disease speciﬁc, state-based organization currently with communities in Rhode Island and Massachusetts. The Foundation addresses challenges faced by people living with rare diseases, including: inaccurate or no diagnosis, lack of awareness, insurance and/or other reimbursement issues, and isolation. Their mission is to work on these issues at a state level by providing support and information to patient’s families, and by advocating and raising awareness for rare diseases in the classroom, the medical community and the general public.
SavingCase is a patient advocacy group and blog organized to help raise awareness of Hunter syndrome. SavingCase offers educational materials, fundraising events, advocacy efforts for families affected by rare diseases, and other patient support initiatives. Melissa Hogan, whose son, Case, lives with Hunter syndrome, founded and manages SavingCase. She also serves on the Advisory Board for the Mayo Clinic Center for Social Media and runs the Hunter Syndrome Research Coalition, a group of organizations that seeks to advance research toward a cure for this disorder.