Intended for U.S. use only
Your guide to help find answers about your child’s health.
COMMUNITY

Connect with communities of parents and caregivers near you and around the world.

Share your story or learn from others by joining a local or national community of parents and caregivers who may be going through a similar journey as you.

Join our Facebook group to connect with other RareNavigator parents and caregivers by visiting RareNavigator Community Facebook Group

National Communities

The Mighty

The Mighty is a digital health community created to empower and connect people facing health challenges and disabilities. With 2 million registered users, The Mighty offers an online community for people facing health challenges and the people who care for them.

National Organization for Rare Disorders (NORD)

NORD is a patient advocacy organization committed to supporting individuals with rare diseases and the organizations that serve them. NORD offers parents free webinars, fact sheets and other educational materials on rare disease, as well as Patient Assistance Programs and a rare disease database.

Rare Action Network (RAN)

RAN, as part of National Organization for Rare Disorders (NORD), is a leading advocacy network working to improve the lives of the millions of Americans living with a rare disease. While mainly working at the state level, RAN filters information up to NORD’s national federal policy team to help address issues of national concern.

Undiagnosed Disease Network (UDN)

The UDN is the leading clinical research study for undiagnosed patients. Funded by the National Institutes of Health (NIH) Common Fund, the study bridges the gap between clinical care and research by bringing together experts from around the country to seek diagnoses for the most complex undiagnosed cases.

Global Groups

EURORDIS-Rare Diseases Europe

EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of 944 rare disease patient organizations from 73 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe. By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilizing the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services.

International Rare Diseases Research Consortium (IRDiRC)

IRDiRC unites national and international governmental and non-profit funding bodies, companies (including pharmaceutical and biotech enterprises), umbrella patient advocacy organizations and scientific researchers to promote international collaboration and advance rare diseases research worldwide. Its vision is to enable all people living with a rare disease to receive an accurate diagnosis, care and available therapy within one year of coming to medical attention.

Rare Diseases International (RDI)

RDI is the global alliance of people living with a rare disease of all nationalities across all rare diseases. Its mission is to be a strong common voice on behalf of rare disease patients around the world, to advocate for rare diseases as an international public health priority and to represent its members and enhance their capacities.

RareConnect

RareConnect is a platform for rare disease patients and families from around the world to connect with each other and share their rare disease experience.