On 26th February, three of our committee memebers (Fiona, Myra and Gary) attended the Rare Disease Day Reception at the House of Commons.
Liz Twist MP opened the event and there followed talks from Dr Jayne Spink, Chair of Rare Disease UK, Dr Jenny Harries, Deputy Chief Medical Officer for England, and two patients affected by rare disease.
We were all informed about the value of carrying an “alert card”, which is credit card size, and has on it the patient’s name, medical condition, medication, allergies and any other relevant informationhe idea is to alert medical staff in case of accident, for example, so that the appropriate care can be given. Although alert cards are commercially available, Genetic Alliance UK aims to remind the government of its commitment to implement alert cards for all rare disease patients. The Genetic Alliance point out that “alert cards can be highly effective, offering benefits to both patients and health care professionals and can ultimately save lives.
It was a great networking opportunity and Fiona, Myra and Gary conversed with many others from rare disease charities.