Advocacy Support Seminars



Advocacy Support Seminar, Tuesday 23 April 2024

Panel discussion
Advocacy Support Seminar

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,
Panel discussion
Advocacy Support Seminar

Patient advocacy: Collaboration or competition

Moderator: Kim Stephens, Executive Director, Muenzer MPS Research & Treatment Center
Melissa Penn, Director Patient Engagement Research & Development, Bayer
Josie Godfrey, Co-Founder and Chief Executive Officer, Realise Advocacy
Terri Klein
Advocacy Support Seminar

Identifying patients and communities underserved by rare - How we are changing the face of MPS

Terri Klein, President & Chief Executive Officer, National M.P.S. Society
Donna Sullivan
Advocacy Support Seminar

Complicated: The Film - Supporting rare disease In the margins of medicine

last published: 20/Apr/24 16:35



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