On the 15th of February, I was pleased to be asked to attend Medics 4 Rare Diseases annual symposium in person. This year’s event, entitled ‘The Unusual Suspects: rare disease in everyday medicine’, brought together students, health care professionals, researchers, people with lived experience of rare diseases, advocates, and other interested parties together to learn about rare diseases and how we can improve the experiences of those impacted by rare diseases.
A statement that really stood out to me during the event is that rare diseases are ‘individually rare, but collectively common’ with 1 in 17 people being affected by rare diseases in their lives according to Rare Disease UK.
They are individually rare, as 1 in 17 people could be impacted by one or more of over 7000 rare diseases.
The Speakers and Stalls:
The event was also a wonderful opportunity for various organisations to showcase the live changing work they are doing, including Give Blood Spread Love, and Medics 4 Rare Diseases themselves, who are offering FREE rare disease training for medical professionals to allow them to provide better support for those on their diagnostic odysseys, or living with rare conditions. This training is crucial to ensure that aspiring medical professionals know how to identify and support those with rare diseases, and ensuring that the care that themselves and others provide is high quality with the aim of making the lengthy diagnostic process, or diagnostic odyssey, less arduous for those involved.
The event had a wide range of incredible and inspiring speakers: Dunstan Nichol-Wilson talking about his experiences with Sickle Cell, Kym Winter, the CEO of Rare Minds discussing the importance of mental health support for those with rare diseases and their loved ones and support networks, Dr Hayley Crawford and Dr Jane Waite showing their findings from their research with Cerebra on the mental health of those with rare diseases and neuro-developmental disorders, the Student Voice 2022 Prize Winner, Zheqing Zhang, sharing her informative and emotional essay ‘Diagnosing Rare Diseases: A Family’s Story’ which detailed the diagnostic odyssey of Sarah and her family to their diagnosis of Vascular Ehlers Danlos Syndrome, and Professor Ed Wild who presented on the often lengthy processes of clinical trials and research conducted to try and find cures for rare diseases, and in his research specifically, Huntington’s Disease.
Getting Personal:
Most importantly for me, this event led me to learn that my sister’s condition is also a rare disease, and allowed me to start connecting her with a supportive community that we didn’t even know she was part of. What started off as my professional interest in global high quality healthcare access became even more personal. I am so glad that this happy coincidence may lead to additional support for my sister as a person living with a rare disease. This demonstrates just how much more education is needed around rare diseases and the support network that is so often out there for those impacted by them. If we didn’t know that my sister’s condition was considered a rare disease, then there must be so much more for us, as a family, and as a wider community, to learn too!
Show Your Stripes – 28th Feb!:
It is in both support for Medics 4 Rare diseases, and my newly discovered personal connection to the rare disease community that I encourage you to ‘Show Your Stripes’ on Rare Disease day on the 28th of February, by wearing anything striped and sharing M4RD and other rare disease organisation content to raise awareness and improve attitudes towards rare diseases. 1 in 17 is ,in fact, not so rare at all!
I’d also like to express my gratitude to M4RD for hosting this event, inviting me along, and giving me the opportunity to learn from all of the fantastic speakers and attendees, as well as for giving me the opportunity to discover that I had a whole new personal reason to support the rare disease community!
If you would like to engage with Medics 4 Rare Diseases, please check their website for more details!
Students for Global Health 