Congratulations to the 2024 RARE Champions of Hope!

The RARE Champions of Hope Awards celebrate, honor and recognize those in the rare disease community who are raising the bar through their innovative approaches to research, programming and advocacy to create meaningful impact in the rare disease space. Awardees are beacons of hope in the rare disease community who lean in, take risks and lead collaborative efforts to positively impact the lives of rare disease patients, caregivers and families across the globe. 

The 2024 winners are: 

RARE Champion in Advocacy

This award recognizes an individual or organization who has created innovative programming and/or successful partnerships to support, educate, research or enable their communities in meaningful and impactful ways. 

Ronisha Edwards-Elliott, MSW, LSW, CHW

Patient Advisor/Board Member, Pathways to Trust

Ronisha Edwards-Elliott MSW, LSW, patient experience and connection to the sickle cell community enable her to provide qualified patient input and expertise. As an advocate, Ronisha has helped create the American Society of Hematology (ASH) sickle cell guidelines concerning pain management, with healthcare providers focusing on bridging the gap within health. She is a doctoral candidate in health sciences, and her research focuses on incorporating patients into interdisciplinary care teams.

RARE Champion in Industry

Erin Murphy

Executive Director, Corporate Affairs, Mirum Pharmaceuticals, Inc.

Erin Murphy currently serves as Executive Director and Head of Corporate Affairs at Mirum Pharmaceuticals, a rare disease

 company based in the San Francisco Bay Area.In this role, she oversees the global communications programs as well as patient advocacy. Erin has spent nearly 20 years in the pharmaceutical industry focused on communications and advocacy at

 companies spanning a range of therapeutic disciplines including Dermira (now Eli Lilly) (2017-2020), Pharmacyclics (now part of AbbVie) (2015-2017), Onyx Pharmaceuticals (now Amgen) (2009-2015) and SciClone (2005-2009). Throughout her career, she has dedicated her time to helping companies grow their corporate brand and story, bringing stakeholders along for the journey. Erin has extensive experience in corporate, product and pipeline communications, building large- and small-scale PR campaigns, as well as developing digital and social media programs and growing online audiences. She has a keen interest in internal communications, ensuring employees are connected and engaged with the company mission and vision, while helping to inspire and foster pride in their company and collective successes. Erin is passionate about patient advocacy and ensuring that the voice of the community is kept at the forefront of conversations throughout every stage in the company’s journey. She has focused much of her work on the evolution of engagement between industry and advocacy, driving deeper relationships that lead to meaningful outcomes for the patient communities. Erin is committed to helping advocates find innovative ways to elevate disease awareness and promote the impactful work done for the patients and families they serve. Erin cares deeply about mentorship and helping new communications and patient advocacy professionals grow their careers. Erin earned a BA summa cum laude in public relations and mass communications from Arizona State University.

RARE Champion in Advocacy (Organization) 

This award recognizes a patient advocacy group/organization that has created innovative programming and/or successful partnerships to support, educate, research or enable their communities in meaningful and impactful ways. 

Child and Youth Care Zimbabwe 

Child and Youth Care Zimbabwe is a registered Zimbabwean-based non-profit organization focused on improving the quality of life of families living with a rare disease. They endeavor to raise awareness through education and advocate for the rights of people living with rare diseases and their families, conduct research by contact tracing, mapping, treatment, and care of Rare Diseases in Zimbabwe (RDZ). To make this change possible they mobilize resources to support service delivery for people living with rare diseases. Child and Youth Care Zimbabwe works within the framework of global health coverage for all.

RARE Champion in Research

This award recognizes trailblazers and leaders in rare disease research, drug development and scientific processes who have

 taken an innovative approach to advance outcomes for the rare disease community. Nominees in this category should be conducting patient-driven research, research in academia or research within an advocacy organization.

Hilary Vernon, MD PhD

Hilary Vernon, MD PhD is an Associate Professor of Genetic Medicine at Johns Hopkins University School of Medicine. Dr. Vernon is the director of the Mitochondrial Medicine Center at Johns Hopkins Hospital and the Barth Syndrome Interdisciplinary Clinic at Kennedy Krieger Institute. She serves on the Scientific and Medical Advisory Boards of the Barth Syndrome Foundation and the United Mitochondrial Disease Foundation.

RARE Champion in Health Equity

This award recognizes an individual rare disease patient or advocate who has created innovative programming and/or developed meaningful approaches to tackle the systemic and organizational challenges that contribute to an inequitable rare disease community. Nominations in this category should include the disparity the nominee is working to address, the underserved community the nominee is working to empower, and the impact the individual / their program has had on the identified community.

Wendy Chung, MD, PhD

Chair, Department of Pediatrics, Boston Children’s Hospital

Wendy Chung, M.D., Ph.D., is a clinical and molecular geneticist and the Chief of the Department of Pediatrics at Boston Children’s Hospital and Harvard Medical School. Dr. Chung directs NIH funded research programs in human genetics of neurodevelopmental disorders, autism, congenital diaphragmatic hernia, congenital heart disease, and pulmonary hypertension. She is the leader of GUARDIAN, a study to advance health equity and early diagnosis for rare genetic diseases.