Your unique perspective can drive meaningful change.
By sharing your experiences, you can highlight the specific needs and challenges faced by the rare disease community, ensuring that policies are inclusive and supportive. Your voice can help secure funding for research, improve access to treatments, and raise awareness, ultimately leading to better healthcare outcomes and quality of life for all affected individuals.
Join our Board of Trustees
If you’re ready to turn that passion into action, consider joining our Board of Trustees. As a board member, you’ll help shape our strategic vision, guide key initiatives, and ensure the rare disease community has a strong voice at every level. Your leadership can make a lasting difference—learn more about how to get involved today.
Apply Here
