Advocacy Support Seminars

Understanding and addressing the unique needs of rare disease patient advocacy leaders and communities

We will begin this session with the screening of a 16 minute film from The Disorder Channel showing the stories of families facing rare diseases and how they went on to become founders of Patient Advocacy Organizations. The film will be followed by a facilitated group discussion highlighting the challenges faced by rare disease patient advocacy organizations with a focus on their leaders.

Challenges include mental health stressors, compassion fatigue, "founder syndrome," adding professional staff who do not have the lived experience with the disease, PAG leader burnout, PTSD, feelings of isolation, and grieving.

Attendees - whether PAG leaders themselves, rare disease community members, or industry partners - can expect a thought-provoking discussion that deepens their understanding and inspires action to increase support for these essential organizations and their leaders.

Albert Freedman, Counseling Psychologist / Rare Dad, Rarecounseling.com

Daniel DeFabio, Rare Dad (Menkes Disease), Co-Founder, Disorder: The Rare Disease Film Festival

Michelle Davis, Executive Director, International Fibrodysplasia Ossificans Progressiva (FOP) Association, Inc.

Patient advocacy: Collaboration or competition

Moderator:
Kim Stephens, Executive Director, Muenzer MPS Research & Treatment Center

Melissa Penn, Director Patient Engagement Research & Development, Bayer

Frank Rivera, President, Stronger Than Sarcoidosis

Josie Godfrey, Co-Founder and Chief Executive Officer, Realise Advocacy