Rare diseases are defined by the FDA as diseases or conditions that affect less than 200,000 people and impact more than 30 million Americans and over 400 million people worldwide. There are more than 10,000 different kinds of rare diseases but very few, less than 10%, have options for treatment and many are life-threatening.
There is hope. In recent years, significant policies, systems and investments have advanced in rare diseases. Currently, many clinical development projects are underway, including new and improved treatments and potentially curative cell and gene therapies.
At RareRising, we are committed to supporting the collective movement to ensure healthcare is accessible to everyone in need.
RareRising (formerly Upequity) is a registered 501c3 nonprofit that delivers patient-centered, evidence-based research, incubates emerging rare disease entities on their journey, and explores novel solutions to positively impact rare disease communities.
We are organized into several key areas:
(click the icons to learn more)
*Sources include: International Federation of Pharmaceutical Manufacturers and Associations, National Institutes of Health, Rare-X, EveryLife Foundation for Rare Diseases, and Global Genes.