More Than 95% of Rare Diseases Have No Treatment. Clinical Trials Are Essential for Identifying Therapeutic Options

Participating in a clinical trial can help you access investigational therapies intended to provide new or better ways to treat medical conditions. If you are interested in participating in a clinical trial as a treatment option, speak with your provider who may be able to make a recommendation.

See supporting resources in our library

Our Resource Library offers tips and other information, including:

  • What to know about participating in clinical research
  • Questions to ask your provider
  • Navigating insurance coverage for clinical trials
  • Financial assistance for clinical trials

Where can I find information about current rare disease research?

We share information about opportunities to participate incurrent clinical trials and other studies and in our Rare Disease Database. Below is a list of other resources.

  • is a US government website that lists all studies receiving US government funding, and some supported by private industry
  • shares information about clinical trials sponsored by private sources
  • provides information about clinical trials conducted in Europe
  • ResearchMatch is a nonprofit program funded by the National Institutes of Health (NIH). It helps to connect people interested in research studies with researchers from top medical centers across the US