The Student Voice Prize is an annual, international essay competition that brings rare diseases into the spotlight within the medical community. Hosted by Beacon for Rare Diseases and Medics4RareDiseases, this initiative invites medical students, nurses, and future healthcare professionals to engage with rare disease patients and explore the unique challenges they face. The winning essays are published in the prestigious Orphanet Journal of Rare Diseases, ensuring that these valuable insights reach a wider audience.
This year, Safiya, a second-year medical student at King's College London, participated in the competition, choosing to explore how collaboration in medicine can lead to better outcomes for patients with rare diseases. Her case study focused on Kelly and her daughter Cate, who was diagnosed with Generalized Lymphatic Anomaly (GLA), a rare and complex lymphatic disorder.
Cate’s Journey: A Story of Strength and Support
Cate was an active, healthy teenager until an incidental finding during an X-ray changed everything. What started as a simple trip to the hospital after falling on her shoulder led to a shocking discovery—an alarming amount of pleural effusion in her lung. Further tests and a biopsy confirmed that she had GLA, a diagnosis that was both unexpected and overwhelming.
Her mother, Kelly, vividly remembers the uncertainty and fear that followed. Cate was subjected to rigorous testing, multiple referrals, and long hospital stays. However, what made a significant difference in their journey was the collaborative approach taken by her medical team. Acknowledging their limited experience with GLA, Cate’s doctors consulted Dr. Denise Adams at Children’s Hospital of Philadelphia, an expert in lymphatic anomalies. This international collaboration ensured that Cate received the best possible care, including an MRL (Magnetic Resonance Lymphangiography) to map her lymphatic system and a tailored treatment plan using Sirolimus, which successfully stabilized her condition.
Despite the challenges, Cate has continued to live her life to the fullest. She remains committed to her education and passions, refusing to let her condition define her. Her story is a testament to the power of resilience, medical teamwork, and the importance of involving patients and families in decision-making.
Download and read the full case study here.
Why the Student Voice Prize Matters
The Student Voice Prize challenges future healthcare professionals to think beyond textbooks and consider the real-life impact of rare diseases. The competition encourages a holistic approach to medicine, where doctors recognize patients as experts in their own conditions and value their voices in shaping treatment plans.
By participating in initiatives like this, we can foster a new generation of healthcare providers who are not only knowledgeable about rare diseases but also empathetic, collaborative, and dedicated to improving patient experiences.
To the CLA community, this is why your stories matter. Your experiences have the power to shape the future of rare disease care. By engaging with programs like the Student Voice Prize, we can continue to build bridges between patients and healthcare professionals, ensuring that no one facing a rare disease feels unheard or unsupported.
A huge thank you to Safiya, Kelly, and Cate for sharing their journey, and to Beacon and Medics4RareDiseases for championing this incredible initiative!
