To England's Future Prime Minister After Brexit: Please Don't Forget the Rare Disease Community
Dear Mrs. May,
Firstly I would like to extend my congratulations on your appointment as the next prime minister. I am of course aware of the significant challenge you are now facing in leading the UK through the separation process from the EU. I am contacting you now, to ask as part of this separation process, that the relatively small, but very important rare disease and undiagnosed community are considered.
I am the mother of a child with an undiagnosed genetic condition – one of 6,000 unique children born every year. There are many more diagnosed with rare diseases. The EU has made rare disease a strategic health priority, and its influence in this area has been significant. You may already be aware the UK is the centre for genetic research for rare diseases and I fear we might lose this status in due course. These genetic research programmes are the hope we have for a future diagnosis – which is our only chance of a prognosis, potential treatment and maybe prevention in future generations. There is a high level of anxiety in the disability community, that is amplified in the rare disease and undiagnosed community, as we face the possibility of losing the significant EU
investment in this field. For many of our community, we fear there will simply be too few affected patients in the UK to justify the investment required. The key benefits of the EU focus in this area to date are:
- Collaboration across borders and critical mass for an otherwise small population
- Shared skills, resources and information – including access to niche experts across all countries
- Research funding (otherwise cost prohibitive)
- Medicine authorisation across the EU (otherwise cost prohibitive)
- Innovation and knowledge transfer permitted by European Directives
- Health benefits for those in the rare/undiagnosed community
I appreciate it is too early to begin to understand the full implications of Brexit. However if consideration can be given to protecting some of the critical work in this area, it would be of significant benefit to this community I, and many others, sincerely hope that you will give this full and proper consideration.
GG H. has spent the last six years navigating the world of special needs and specifically, the much smaller world of being a SWAN – Syndromes Without a Name. She hopes that by sharing their story and experiences, she can raise awareness of what it is like to be undiagnosed, and also help to improve the coordination of care and services for those without a diagnosis.
gg-h