Grateful for Connection, Community, and Momentum in Rare Disease Advocacy
Early May, Love Never Sinks had the opportunity to attend the PPALS PACT 2026 Training Program as part of Track II for Patient Advocacy Organizations. The experience was incredibly meaningful and provided valuable opportunities to learn, collaborate, and strengthen connections within the rare disease community.
PACT brought together patient advocacy leaders, researchers, healthcare professionals, and nonprofit organizations all working toward a common goal — improving support, research, and outcomes for patients and families affected by rare diseases.
One of the most meaningful parts of PACT is simply being in a room with others who understand this work. Advocacy often lives in both hope and heaviness at the same time. Many of us are navigating lived experience while also building organizations, supporting families, and trying to open doors in research and healthcare. There was a shared understanding that patient organizations are built from love, urgency, and lived experience—and that the patient voice must remain at the center of everything we do.
Throughout the week, important discussions focused on topics including research readiness, patient registries, nonprofit sustainability, communication strategies, industry collaboration, and the role advocacy organizations play in shaping the future of rare disease research. One of the strongest themes throughout the training was the importance of ensuring patient and caregiver voices remain at the center of these conversations.
For Love Never Sinks, these experiences are invaluable. As a small organization serving the Lesch-Nyhan community, opportunities like PACT help strengthen our ability to advocate for families, build meaningful partnerships, and better prepare for future research opportunities and collaborations. The knowledge shared throughout the week will continue to help guide our work in education, family support, research readiness, and community engagement.
2026 Ppals Pact Course Class
Following PACT, Love Never Sinks also attended the Sanford Rare Disease Summit on Thursday and Friday. The summit created additional opportunities to connect with individuals and organizations across the broader rare disease and research community.
Love Never Sinks Table sharing information at the 2026 Great Plains Rare Disease Summit hosted by CoRDS
One of the most meaningful parts of the week was hearing the stories of other families and advocates navigating rare diseases. While every diagnosis is different, there is a shared understanding within the rare disease community that creates powerful connections rooted in resilience, hope, and determination. The opportunity to share the Lesch-Nyhan story while also listening and learning from others was both humbling and inspiring.
The summit also opened doors to new relationships within the research community and reinforced the importance of collaboration across organizations, clinicians, researchers, and patient advocates. These connections help build momentum not only for individual diseases, but for the entire rare disease community working toward better treatments, improved care, and stronger support systems for families.
Ted greeting us for our Sanford Research Center tour
Tour of Sanford Research Center
Love Never Sinks returns home from this week feeling grateful for the people met, the stories shared, and the growing network of individuals committed to advancing rare disease advocacy and research. Experiences like these continue to strengthen our mission and help move the Lesch-Nyhan community forward together.
