Sustaining Rare Disease Advocacy

This interactive workshop equips rare disease advocacy leaders with practical frameworks and actionable strategies for building sustainable organizations while advancing their advocacy missions. Through a first principles approach, the session addresses three critical dimensions of advocacy work: organizational sustainability, advocacy effectiveness, and personal wellbeing.

Participants will gain concrete tools to develop diversified funding models spanning philanthropic, industry, and community sources; map and engage a comprehensive range of stakeholders; and measure their impact across four progressive levels of change. Throughout the session, examples from successful environmental, indigenous rights, and social justice movements will illustrate how these frameworks can be applied in regional contexts, and interactive elements ensure participants can immediately apply these concepts to their own organizations and rare disease advocacy efforts.

Speaker: Irsyad Ramthan (Product & Growth Consultant at Social & Environmental Startups)

Biography: Irsyad Ramthan is a social innovation leader with over 8 years of experience developing technology solutions…