My time working for Medics4RareDiseases by Nadine Jefferies

After an incredible year and half, I have decided to move on from working at Medics4RareDiseases. But before I go, I’d like to look back on my time at this wonderful charity and all the people I met along the way.

I first joined M4RD as an Executive Assistant, meaning I was an administrative pair of helping hands (particularly for Lucy, who has to juggle many commitments!). This is when I first began to understand the basics of rare disease, the diagnostic odyssey, and other common challenges that patients living with rare conditions face.

My first experience of Rare Disease Day was a whirlwind! I leant on my previous warehouse training to send out hundreds of stripey socks for M4RD’s #ShowYourStripes campaign. I also met many people from the rare disease community at M4RD’s annual symposium at the Royal Society of Medicine. This was where I heard first-hand stories and experiences of living with rare conditions, which hammered home the importance of support and advocacy for patients. 

A highlight of my time working at M4RD was being able to attend the conference ‘For a patient-driven evolution of the Orphan Medicinal Product Regulation: Addressing unmet needs’ at the European Parliament in Brussels. It was a great opportunity to understand more about how policy can be used to drive better treatments for rare disease patients, and improve their quality of life. You can read my blog about it here.

After 6 months, I became M4RD’s Project Coordinator and ran the collaboration between NHS England and Medics4RareDiseases. The project aimed to integrate rare disease education across the Genomics Education Programme and GeNotes. This allowed me to work alongside the rare disease community to find out what they wanted healthcare professionals to know, and it has been so rewarding to see patient-centred content be adapted and published for healthcare professionals. Read more about this project here.

I have learnt and grown an extraordinary amount since joining M4RD, and have enjoyed seeing the charity go from strength to strength in influencing policy and medical education. I am very grateful to have got to know so many rare disease patients and advocates, carers and families, who are dedicated to pushing for better standards of care and support for their loved ones.

Medics4RareDiseases is a small but mighty charity that does phenomenal work, and I will continue to cheer them on. I look forward to seeing all that is achieved to improve the lives of those living with rare conditions in the coming years.