Robert Troy (Longford-Westmeath, Fianna Fail) | Oireachtas source

There is a commitment in the programme for Government that measures will be introduced to help patients with rare diseases. A lady in my constituency is the only person in Ireland suffering from Degos disease. The Department of Health is well aware of her situation. She is unable to access any treatment for that disease. ME Advocates Ireland plan to hold a protest outside Dáil Éireann on Thursday, 10 May, for a number of hours. That protest will be the 12 month anniversary of a protest it had last year. Myalgic encephalomyelitis, ME, is recognised and has been classified as a neurological disease by the World Health Organization, WHO, since 1969. However, the HSE is yet to recognise or acknowledge it as a disease and is yet to introduce an adequate treatment plan for sufferers of ME.

In light of the commitment in the programme for Government to assist people with rare diseases, when can a patient who is the sole sufferer from Degos disease in Ireland, and patients suffering from ME, expect to get some help and assistance and access to healthcare from the Government?

See this speech in context