Rare conditions are individually rare but collectively common

Recently we attended the Medics4 Rare Diseases tenth-anniversary conference - Rare diseases in everyday medicine. It explored the evolving rare disease journey, with the focus this year being the impact on mental health and wellbeing. 

The event took place at the Royal Society of Medicine with around 60 medical professionals attending in person and over 100 online. It was hosted by Dr Lucy McKay who opened the conference with a strong quote:

"Imagine how difficult it is, that wherever you go and whoever you meet, you have to explain from the beginning what your disease is."

Very different rare diseases face similar challenges which include navigating healthcare which could be alleviated by a medical professional who understands the isolation and difficulties that living with a rare disease has on the person.

Professor Ed Wild spoke on behalf of Huntington's disease to talk about the disease and the many misconceptions around it. He showed patient videos, talked about the need for more care coordination within the community and discussed current research studies looking at treatments for Huntington's disease.

Two members from the Huntington's community attended the event to represent us alongside one of our Specialist Huntington's Disease Advisers, Anna Holmes. Marij and Kevin were both delighted to meet Professor Ed Wild, they were also able to chat with the conference attendees and answer any questions from a lived experience perspective.

“It was a privilege to sit through the talks by Professor Ed Wild at the rare diseases conference; hearing about the research and progress being made to support those affected by Huntington's disease offers hope to so many people. Knowing there is research actively going on gives hope for the future and hearing the importance of mental wellbeing and support at the conference shows the thought towards affected families. With events like this, awareness increases and brings to light something which is hard to speak about and strengthens the network and community of support.”

"I found the event very interesting. It was exciting to hear about the latest research regarding Huntington's disease from one of the leading experts in their field."

This was a huge opportunity to raise awareness about Huntington's disease among medical professionals and trainees and we are very grateful for the Medics4 Rare Diseases team for inviting us to join.

Thank you to all the speakers on the day, we attended both in person and remotely and found it a really interesting and informative day. #DareToThinkRare.