Hello from M4RD’s new Training Programme Manager
July was a busy month for M4RD, and marked my first couple of weeks with the team as Training Programme Manager!
The capital of the north!
Just a few days into my new role, I boarded the 7.10 train from Glasgow to Manchester with my overnight backpack like it was my first day of school. The team spent the day at Manchester Rare Conditions Centre, hearing from clinicians, policy-makers and patient advocates to mark the centre’s second birthday. Lucy also had the chance to speak about M4RD’s work and highlighted Manchester’s long history of rare disease research and care.
After checking out the impressive poster presentations, it was time for a quick hotel pit stop before heading for a bite to eat in the Northern Quarter. En route, I learned that M4RD has many talents, but that navigation is perhaps not one of them (let’s blame google maps!). It was great to spend the evening together as a team over a couple of fancy craft beers.
The next morning, it was heads down as M4RD was joined by our Chair of Trustees Lindsay to discuss our exciting plans for the upcoming academic year. We also considered how different personality types work best within a team, and how we can each capitalise on our individual strengths.
I headed home full of excitement, and can’t wait to see what the next few months have in store!
My journey into a rare career
Like some of my colleagues, I began my working life as an NHS doctor, but my interest in rare conditions dates back to my university days. A chance interaction with a patient sparked an enduring passion, and ultimately led to my decision to transition from medical work into a role supporting families affected by Huntington’s disease (HD).
HD is a rare neurological condition affecting movement, memory and mental health, and working with families over several years gave me invaluable insight into what it means to live with a rare condition. One of the most difficult areas they told me about was their experience that healthcare professionals often don’t have the knowledge and understanding required to deliver quality care for rare patients. Whilst every rare condition is unique, this is an issue reported across the board by affected people.
My other area of professional interest that I had been developing over the years is professional education. When I learned about my new role at M4RD, I knew that this would be an opportunity to combine my interests and, more importantly, to take all that I had learned from HD families to bring about change for those living with rare conditions on a wider scale.
Exciting times ahead!
I’ve joined M4RD at an exciting time, as the team grows to meet our ambitious goals, and a key part of my role is to develop our new training strategy. We want to support every medical student and doctor to learn about the common challenges of living with a rare condition during their training, so that patients can enjoy holistic, coordinated care.
As well as overseeing M4RD’s training activities, I’ll also be supporting my lovely colleague Jo with M4RD’s Ambassador scheme, and I can’t wait to meet our new intake in September!
Finally, in collaboration with Beacon for Rare Diseases, I’ll be delivering the Student Voice Prize, an international essay competition that encourages healthcare students to learn a little about the world of rare conditions. In previous years, the winner has had their work published in the Orphanet of Rare Diseases! You can read about Diya Porwal’s (previous winner in the ESOL subcategory) experience of the Student Voice Prize here.
If you’d like to connect, you can email me at helen@m4rd.org, or find me on LinkedIn.
