News
Global Genes to Connect Rare Disease Patients and Families With Medical Students to Build a Stronger, More Compassionate, Equitable, Inclusive and Informed Healthcare System
For the past six years, Global Genes, a leading rare disease patient advocacy organization, has connected hundreds of medical students with rare disease patients/families to inform, equip, and inspire the next generation of medical professionals to take on careers in rare disease care and research through the RARE Compassion Program.
Through this program, Global Genes provides a unique opportunity to foster mutual respect and understanding, which is measured by improved patient trust and engagement, enhanced diagnostic and clinical awareness, and competency among young clinicians who will go on to play a key role in course-correcting or accelerating a patient’s rare disease odyssey.
This year’s RARE Compassion Program will have a particular emphasis on families and students from diverse backgrounds. The program will include 100 medical students and young investigators from more than 40 medical schools from around the world and 75% representing Black, African American, Asian, Hispanic, or Native American communities. Medical students will participate in a two-part rotation to gain greater understanding of the experiences and burdens of pediatric and adult patients with rare diseases as well as the unique challenges of underserved populations and will also be encouraged to apply for the David R. Cox Scholarships for Rare Compassion in order to help them continue to pursue their interests in advocating for the rare disease community.
“Global Genes is committed to creating an environment that values and respects the differences and similarities between individuals and cultures in order to advance equity and access to quality care throughout the rare disease community,” said Global Genes CEO Craig Martin. “It is our goal that not only more Black, African American, and Hispanic medical students and young investigators will be inspired to focus on rare diseases throughout their career, but to also continue to connect their peers and former RARE Compassion Program alumni to strengthen the referral network and work together to improve clinical outcomes and access to care for undiagnosed and diagnosed rare disease patients. Through this program, we continue to help foster understanding of and compassion for the challenges and experiences that patients diagnosed with a rare disease are faced with every day.”
Global Genes is grateful to the thousands of patients and family members who have contributed their valuable time and insights to the RARE Compassion Program and the medical schools, students, and alumni who have participated, as well as Horizon Therapeutics, Travere Therapeutics, Ionis Pharmaceuticals, Ultragenyx, and Zogenix for their support of this program.
About Global Genes®
Global Genes is a 501(c)(3) nonprofit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally. In pursuit of our mission, we connect, empower, and inspire the rare disease community to stand up, stand out, and become more effective on their own behalf – helping to spur innovation, meet essential needs, build capacity and knowledge, and drive progress within and across rare diseases. We serve the more than 400 million people around the globe and nearly one in 10 Americans affected by rare diseases. If you or someone you love has a rare disease or are searching for a diagnosis, contact Global Genes at 949-248-RARE, or visit our resource hub.