ROHHAD Association

About

The Rohhad Association supports people affected by ROHHAD Syndrome through improved quality of life initiatives, raising awareness, and advancing research. We work closely with the ROHHAD International Consortium—founded by our co-founder Elisabeth Hunter during the COVID pandemic—and collaborate with charities worldwide, including ROHHAD Fight Inc, ROHHAD Association Argentina, Belgium, and Nordic. Each year, our core activities include awareness campaigns, fundraising, advocacy, forming strategic partnerships, hosting online support groups, providing one-to-one peer and family support, and funding ongoing research with teams within the Consortium.

Where we work