The CLA community has a unique opportunity to make a lasting impact on the future of rare disease care and research through The Student Voice Prize Patient Pairing Scheme. Organized by Beacon for Rare Diseases and Medics for Rare Diseases, this international initiative pairs medical students, nursing students, and biological sciences undergraduates or master’s students with rare disease patients or advocates, offering a rare chance to learn directly from those who live with these conditions every day.
The Student Voice Prize Patient Pairing Scheme is more than just a learning experience for students; it’s a bridge between future medical professionals and the real-world challenges faced by rare disease patients. Through this program, students are given the opportunity to arrange an interview lasting up to 1.5 hours with their patient pairing. During this time, they will gain invaluable insights into the patient experience, which they will then use to inform and enhance their academic essays.
For patients and advocates, this is a powerful way to share their stories and potentially influence the direction of future medical practice and research. By participating, they provide students with a first-hand account of living with a rare disease, an experience that could inspire these future professionals to pursue careers focused on rare diseases—a field often overlooked in medical training.
The benefits of this scheme are twofold. Patients and advocates have the chance to make a meaningful contribution to the education of the next generation of healthcare providers. Meanwhile, students gain a deeper understanding of rare diseases, like complex lymphatic anomalies, and patient advocacy, broadening their perspectives on patient care, policy, research, and treatment.
For those in the CLA community who are rare disease patients or advocates, this is your chance to inspire the minds of tomorrow. If you’re interested in participating, please contact LGDA at info@lgdalliance.org by the 20th of September to express your interest and allow sufficient time to be matched with a student.
The competition officially begins for students on the 2nd of October, with the patient pairing scheme running until the 30th of October. It is the responsibility of the student to arrange the interview, but participating patients and advocates are expected to:
- Share information about their rare condition and their experience as a patient or advocate.
- Answer the student’s questions where possible.
- Commit to a phone or video conversation of up to 1.5 hours before the 30th of October.
This is a fantastic opportunity for both students and the rare disease community to collaborate and learn from each other. Don’t miss your chance to be a part of this impactful initiative—reach out today to get involved!
