Round Up for Rare Kids

Round Up for Rare Kids Every day, children in Maryland face the unimaginable challenges of rare pediatric cancers, and their families struggle to find hope and support. Round Up for Rare Kids is a powerful initiative that turns everyday purchases into life-changing support. By rounding up at checkout, you can help fund groundbreaking research, provide critical resources for families, and raise awareness about these devastating diseases. Together, we can bring hope, healing, and a brighter future to children battling rare pediatric cancers, one small act of kindness at a time. Your change can change lives. Whether it's 0.25,0.50, or more, every round-up adds up to make a big difference. Join us in supporting these brave kids and their families. Together, we can ensure that no child fights alone.

Educational Workshops and Panels

This multi-day event, hosted by the Rare Disease Legislative Advocates (a program of the EveryLife Foundation for Rare Diseases), brings together rare disease advocates from across the country to make their voices heard by their Members of Congress. Participants are educated on policy proposals impacting the rare disease community and provided opportunities to advocate for policy changes directly to their Members of Congress. Beyond legislative advocacy, the event offers interactive workshops and keynote sessions where experts share insights on current and emerging policy challenges. The agenda is carefully designed to ensure that advocates gain practical skills for effective communication with policymakers. Further details on the event's sessions and schedule can be found on the official website.

Rare in Africa Initiative

On July 25, 2025, Africa will mark a historic turning point in health equity with the official launch of the Rare in Africa Initiative in Johannesburg, South Africa. Together with our global partners and in collaboration with African First Ladies, leading researchers, health experts, and committed advocates, the Petronille Healthy Society is proud to unite the continent in addressing one of its most urgent and overlooked health challenges: rare diseases and pediatric cancers. The Rare in Africa Initiative is not just a campaign. It is a bold, multi-year movement to accelerate research, promote early diagnosis, expand access to treatment, and support the children and families too often left behind. It will also advocate for forward-thinking policy reform to strengthen national healthcare systems and ensure that no child is denied care because their condition is rare. This is a defining moment for Africa to ignite visibility, catalyze investment, and change the future for millions. The Rare in Africa Initiative calls on governments, industry leaders, philanthropists, and communities to come together to deliver impact that endures.