Collaboration
The Luka The Lion Foundation is honored to collaborate with the following leading organizations that support the rare disease community.
Be The Match | website | Global leader in bone marrow transplantation that conducts research to improve transplant outcomes provide support and resources for patients, and partner with a global network. The Luka The Lion Foundation supports volunteer efforts including swab kit assembly and bone marrow registry events.
Global Genes Foundation Alliance | website | Coalition of rare disease foundation to exchange best practices and share lessons learned to drive better outcomes for the entire rare disease community. The Luka The Lion Foundation serves on the Foundation Alliance.
North Carolina Rare Disease Coalition | website | Assist the NC Advisory Council on Rare Diseases in identifying issues of importance to the rare disease community that can be addressed through public policy, serve as a conduit for communication and advocacy on behalf of rare disease stakeholders, and ensure rare disease is a public health priority. Luka The Lion Foundation Founder, Julia Fisher, has been invited to participate in a video sharing rare disease stories for the Coalition's "Rare Disease Day is Every Day NC Legislative Event."
Rare Disease United Foundation | website | Non-disease specific, community-based organization, working at state-level on legislation that has a direct impact on people living with rare disease, providing support locally, and establishing relationships at local hospitals and medical schools. Creator of the Beyond the Diagnosis Art Exhibit which will travel around the country to medical schools and hospitals. Luka has been invited to represent rare undiagnosed angels in the upcoming Diagnosis Art Exhibit.
Undiagnosed Alliance from Rare & Undiagnosed Network | website | Establishing a new hope for the undiagnosed united as doctors, scientists, entrepreneurs and advocates, we are raising awareness and provide unassailable support for our most vulnerable. Goals are to break down silos in the medical system, challenge flawed medical reimbursement, demand genome sequencing as a first tier diagnostic test, and encourage law makers to fund research on undiagnosed diseases. Luka The Lion Foundation Founder, Julia Fisher, serves on the Advisory Board.
UNC Health Care / NC Children's Hospital / UNC Pediatric Hematology-Oncology / UNC Pediatric Bone Marrow Transplant | Oak Foundation | website | Project to improve patient outcomes and the quality of holistic care available to pediatric patients and their families treated at UNC with a focus on psychological, social, spiritual, and emotional support. The Luka The Lion Foundation has been invited to share experiences to represent the rare, care-giver perspective.
