Be a Part of Rare Disease Research

We understand the hurdles you face


Rare disease diagnosis is an uphill battle – a lack of awareness amongst healthcare providers and a complex healthcare system often leave patients and those caring for them feeling lost. 

Once diagnosed, treatments and interventions are difficult to access, if they even exist. Developing rare disease therapies is a constant struggle to connect the few researchers studying these diseases with such small populations of patients.

Health research is how we understand the impact of these diseases and develop accessible therapies to improve patients’ lives.

Please join us if you are a patient, family member, or healthcare provider interested in sharing your rare disease experience or participating in health research.