First meeting 7 pm, Thursday 2 July, in the Mourne Country Hotel
Aim: Our aim in establishing this group is to provide support to people with rare diseases, their families and their carers, and to plan activities of interest to both adults and children.
We know that many people living or working with rare disease in the South Down area currently have limited access to support, including information. We include people with the condition(s), their parents, spouses, siblings, friends and other family members, as well as health care professionals who are able to share and learn with us.
Many are very isolated, and feel very alone, living with conditions such as Ehlers-Danlos or Hypermobility Syndrome, Vasculits, Behcet’s Syndrome, Huntington’s Disease, or PSP (Progressive Supra Nuclear Palsy).
Anyone affected by or working with a rare disease is very welcome to attend the meeting on Thursday 2 July, at 7pm in the Mourne Country Hotel
We want to reach out to as many as possible, to see how together we can make life better, by improving access to information, and by identifying and advocating for needed improvements to services for people from South Down.
If you would like to come, please email firstname.lastname@example.org;