We've compiled a list of advocacy organizations that can help you share your story, connect with others, find knowledgeable healthcare professionals, locate financial assistance, or get involved in research and awareness activities.
The RareKC Project was founded in 2015 to activate a change in the lives of those challenged by rare genetic conditions and diseases.
While individual rare conditions have small patient populations, collectively the rare disease community is larger than the AIDs and Cancer communities combined.
Rare is, by definition, genetic conditions and diseases that affect fewer than 200,000 people in the United States.
Yet, they present a significant health care concern since there are almost 7,000 rare diseases, affecting more than 30 million Americans and their families.