Minister for Health, Irish Government

In Ireland, funding for Treatment Abroad for Irish Citizens with rare conditions including Ehlers Danlos Syndrome is frequently refused despite there not being appropriate, specialist care available here.

Grounds for refusal are often two-fold; firstly, that the care and treatment being sought outside the state is viewed as a second opinion or secondly, that said care and treatment is being sought in the Private Sector of the Health Service of another EU country and thusly, not covered by the TAS. It is our contention that, firstly, if the Irish Consultant first visited is unfamiliar with the presenting condition, then any subsequent referral to a specialist in that field should be deemed a FIRST valid opinion.

Secondly, if the appropriate, timely care and treatment for a particular condition is only available in the Private Health Service of another EU country, the same supports should be afforded these patients as those afforded to any citizen of the state presenting with a more common condition. Your Support would be greatly appreciated in this matter.

We, the under-signed, respectfully request that the Irish Government review and amend its current policies pertaining to facilitating and funding the assessment and treatment abroad of Irish citizens suffering from rare conditions including Ehlers Danlos Syndrome and its associated secondary conditions.

We also request that the Government consider the establishment of a Specialist Hypermobility Unit here in Ireland to allow for the appropriate care to be given, at a local level, to the men, women and children affected by this condition.

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The Treatment Abroad for EDS and Rare Conditions petition to Minister for Health, Irish Government was written by Jordan Egan and is in the category Health at GoPetition.