BBC Spotlights Rare Disease Voices: Medics for Rare Disease Ambassadors Making Headlines
Mainstream media doesn’t often feature rare conditions, but when it does, it makes an impact!
Recently, two ambassadors from Medics for Rare Disease – Charlotte Chapman-Hart and Zainab Alani – brought their stories to millions through BBC coverage. Their experiences of living with rare conditions not only resonated with audiences, but also shone a light on the realities of the diagnostic odyssey and the care challenges faced by people living with rare disease, adding to the growing recognition of these mainstream healthcare issues.
Charlotte Chapman-Hart – Speaking Out and Winning Awards
Charlotte Chapman-Hart first set the media wheels in motion when she gave a candid interview to investigative reporter Nicola Gilroy. Featured on BBC News and several BBC radio stations alongside Medics for Rare Disease CEO Lucy McKay, Charlotte spoke honestly about the long and uncertain road to a diagnosis. She highlighted the life-altering consequences of care that isn’t properly coordinated or informed by rare-disease knowledge – experiences that countless others in the rare disease community will identify with.
Listen to Charlotte speak about her experiences on BBC Radio Nottingham here
Charlotte also appeared on BBC Radio Cambridgeshire with Kerry Devine, where the conversation moved to her professional role at North West Anglia NHS Foundation Trust. Here, she reflected on her recognition as the winner of the “Outstanding Individual” award in the Trust’s staff excellence programme. Her journey illustrates the power of combining lived experience with professional dedication to improve patient services within the NHS.
Of Charlotte’s case, a Department of Health and Social Care spokesperson said:
It is clear that Ms Chapman-Hart’s care fell far below acceptable standards. Our UK Rare Diseases Framework aims to improve awareness of rare diseases among health care professionals and help patients get a final diagnosis faster.
Zainab Alani – From Diagnostic Odyssey to Medical Studies
Building momentum north of the border, fellow ambassador Zainab Alani shared her own rare disease journey with BBC Scotland. Diagnosed with myasthenia gravis while still a teenager, and receiving her diagnosis over the phone, Zainab reflected on the emotional weight and isolation of the experience.
She explained how the diagnostic odyssey, while fraught with difficulty, also inspired her to study medicine. Her mission now is to use that experience to improve healthcare for other people living with rare conditions.
Zainab’s story struck a chord with audiences. BBC Scotland journalist Chris Foote let us know that her interview was selected as a standout clip and even reached the front page of the global BBC News website as one of the top ten most watched stories that day – a rare disease story reaching a truly global audience.
Her words capture just how far she has come:
If you had told my 15-year-old self, who was too weak to open her eyes and too tired to speak, she wouldn’t have believed you. Even the idea of divulging my diagnosis outside of the safety of my family circle would have seemed absurd.
The media attention didn’t stop there. As a result of Zainab’s work, Medics for Rare Disease CEO Lucy McKay was also invited onto Reporting Scotland, where she discussed the broader challenges facing the rare disease community and the urgent need for more informed, coordinated rare disease care.
Amplifying Rare Voices Through the Ambassador Programme
What Charlotte and Zainab have achieved reflects one of the central goals of the Medics for Rare Disease ambassador programme: to empower those with lived experience of rare disease to share their experiences and bring our training for healthcare professionals to life.
Media coverage like this brings the reality home. It reveals the long waits for answers, the emotional toll of misdiagnosis, and the gaps in care that still exist. It also highlights the strength, resilience, and determination of those living with rare conditions, and how they can inspire improvements in healthcare.
By stepping into the public eye, ambassadors show the real face of rare disease. These interviews are already sparking conversations among healthcare professionals, informing the public, and, hopefully, will encourage others in the rare disease community to speak out.
Why Media Attention Matters
The recent BBC coverage represents a shift in visibility for rare disease and a victory for the Medics for Rare Disease ambassadors who continue to use their voices for change.
Every story told is another step towards a healthcare system that recognises the unique challenges of rare disease and responds with empathy, informed communication, and coordinated care.
Medics for Rare Disease is proud to support ambassadors like Charlotte and Zainab. Their courage in sharing their experiences brings the rare disease community into the spotlight, and helps to shape a better future for those who will follow.
Inspired?
Start your free Rare Disease 101 training to transform your clinical practice and find clinical resources including case studies to improve your practise on NHS England’s Genomics Education Programme website
