Rare disease patients and families are a community united through the experience of the disease. To support patients and families, to strengthen the clinical care and to develop treatments to improve their quality of life, the patient community must be organized and mobilized to work together. This requires developing strong connections, building trust and uniting. Hear from two patient advocates who are working to develop and implement community action roadmaps to ensure a better future for patients and families.
Speaker: Mary Beth Campbell, Director of Corporate Partnerships, California Institute of Technology, and Bloom Syndrome Parent Advocate
Speaker: William Davis, Chief Executive Officer, A-T Society
Day 2, Track 2