A unique new cross-border organisation designed to lobby and provide a support network for people with rare diseases and conditions has been launched.
The North West & Donegal Rare Disease Partnership was launched at the Western Trust headquarters in Derry’s Waterside on Wednesday.
This is a brilliant opportunity and it is particularly good it is up here because often the North West gets left out of a lot of things.Consultant Fiona Stewart
Addressing those gathered, Consultant in Medical Genetics, Fiona Stewart, who has been holding weekly clinics with patients with rare diseases at Altnagelvin Hospital over the past 25 years, said there was now have a window of opportunity for them and their families to have their voices heard like never before.
This was because an EU Directive has resulted in all countries having to develop their own Rare Disease Policies, with the UK-wide policy expected to be launched later this month, incorporating a more specific new strategy tailored for, and developed in, Northern Ireland, while the plans south of the Irish border was “well advanced”.
Speaking about the launch of the new North West & Donegal Rare Disease Partnership, she said: “This is a brilliant opportunity and it is particularly good it is up here because often the North West gets left out of a lot of things.
“Lots of meetings are in Belfast, it’s a long way to travel and families with commitments find it difficult, so it’s good to have a kind of impetus coming for the North West, it’s really good to have the cross-border bit because I think that is a really important part of our plan and we are the only UK country with a land border with another EU state so we have lots of opportunities to do things.”
Sandra Campbell, who will co-ordinate the new local project,said she felt it was “important to bring people together, allow people to connect, and hopefully empowering everybody to get more information at the time then need it most and get support when they need it most.
“Hopefully, this will be the start of something for the North West and Donegal.” added.
Speaking at the launch, Foyle SDLP MP Mark Durkan said it was vital to bring people together who may have different conditions, but have suffered “the same symptoms of lack of understanding and lack of profile around their condition.”
Mr Durkan, who sits on two All Party groups dealing with rare, complex, undiagnosed and genetic diseases, added that this was an issue that needed to be taken forward at national and cross-border British and Irish level.