You’ve probably seen us write about the All Party Parliamentary Group (APPG) we are setting up for rare, genetic and undiagnosed conditions over the last few weeks!
If you haven’t you can read about it by clicking here.
Many of our members have been in touch with their MPs to make them aware of how they can play a vital role in increasing awareness of rare, genetic and undiagnosed conditions in parliament through inquiries, parliamentary questions and events as well as helping to ensure that patients and families affected by these conditions have access to appropriate care and support.
We have members who have blogged their open letters to their MPs and talked about their experiences and why they want and need their MP to join this APPG.
You can read their pieces here as well as one member’s letter below. Don’t forget to share on Facebook and Tweet to your followers as well as including SWAN_UK
“As one of your constituents I would like to take the opportunity to ask you to join the APPG on rare, genetic and undiagnosed conditions. My daughter has an undiagnosed genetic condition that amongst many other issues causes epilepsy and a severe learning disability. My daughter attends a local special school and I know that many of her classmates are also undiagnosed. In fact it is estimated that up to 6000 children are born in the UK each year with disabilities that will remain undiagnosed. The impact of being undiagnosed is significant. It is harder to access both medical and non medical services as there is no ‘label’ to attach.
The medical care is not co-ordinated – we see 8 consultants and many therapists who all work hard to help, but who work in isolation. There is no prognosis for my daughter’s future, no comparisons to draw. There are no local support groups for ‘being undiagnosed’ – we do not fit into a community in the way that others with disabilities do. It can be a very lonely place.
The key aims of the APPG will be to increase awareness of such conditions, and to help ensure that those affected and their families receive the support they need. If you require further information, please contact Emily.firstname.lastname@example.org who will be providing secretariat support to the APPG. I would very much appreciate your support for this new group.”