Shaping the Global HD Conversation: HDSOP x HDYO 2025

In March 2025, HDSOP proudly participated in the 2nd HDYO International Congress, held in Prague, Czech Republic. The Congress represents a unique gathering of youth, families, researchers, and professionals from around the world, all united by their commitment to improving the lives of people impacted by Huntington’s disease.

Representing Pakistan on this global stage, HDSOP founder Mustafa Mehkary and HDSOP president Khadija Chaudary were invited as speakers and panellists, where they shared perspectives on the challenges of advocating for HD care and awareness in a resource-limited setting.

Khadija took part in the powerful “Stigmas of HD” panel, bravely addressing the cultural silence surrounding HD in South Asia, the burden placed on caregivers (especially women), and the urgent need to challenge generational shame and social exclusion. Her moving insights earned her the “Most Influential” award at the Congress-an incredible recognition of her advocacy.

Mustafa participated in the Cross-Cultural Exchange panel, where he highlighted the grassroots approach of founding HDSOP and discussed strategies for HD advocacy in under-resourced countries. He spoke about the importance of local organizing, building partnerships with international researchers, and creating space for lived experience to shape care models that reflect cultural and economic realities.

You can watch their sessions here:

Cross-Cultural Exchange Panel (Featuring Mustafa)

Stigmas of HD panel (featuring Khadija)

We are incredibly grateful to HDYO for the invitation to participate in this important event and for creating space for voices from underrepresented regions. Special thanks to Matt Ellison and Jenna Heilman for their tireless work in building a truly global HD community.

We are proud to see Pakistani voices included in this vital international dialogue.  Learning from the challenges and successes of international HD organizations in helping us shape how we serve people in Pakistan. HDSOP will continue working toward a future where families in Pakistan affected by Huntington’s disease are no longer isolated.