New patient forum to assist in the development of new Rare Disease Strategy

by Rose Barrett
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Minister for Health, Stephen Donnelly this week announced a new Patient Forum to ensure that patients and families’ voices are central to the new Rare Disease Strategy.

He is also inviting expressions of interest for patient and public involvement to broaden the network of people interested in contributing to the development of the strategy.

The Patient Forum will be chaired by Ms Vicky McGrath, CEO, Rare Diseases Ireland and Dr Derick Mitchell, CEO, Irish Platform for Patient Organisations, Science & Industry (IPPOSI).

Input collected through the Patient Forum will feed directly into the work of the newly-established Steering Group which is tasked with devising a strategy that sets out the vision for Rare Disease services and research in Ireland and the actions required to achieve this.

Minister Donnelly said: “The establishment of a Patient Forum will ensure that the voices of those living with a rare disease diagnosis in Ireland remains central in the development of the new Rare Disease Strategy.

“The Expressions of Interest survey provides a number of ways for those interested in being involved to feed directly into this new Strategy to ensure that everyone has the opportunity to make a contribution.

“I am delighted that this important work is progressing and I look forward to delivering on the Programme for Government commitment for a revised National Rare Disease Plan in order to support and improve the lives of patients living with rare conditions.”

Chief Medical Officer, Professor Breda Smyth said: “The Expression of Interest survey will allow us to see the level of engagement those living with a rare disease in Ireland would like to have with the work of the recently established Steering Group. The voices of those with lived experience with rare diseases must be central to this work and will ensure that we develop a Strategy that is responsive to the needs of those living with a rare disease diagnosis in Ireland.”

This Expressions of Interest survey is for people who are interested in the future of rare disease services in Ireland, have experience accessing these services, live with or care for someone with a rare disease, or are interested in contributing in a tangible way to the creation of more trusted, and more efficient, relevant rare disease services and research in Ireland.

It is intended that the survey will assist in the shaping of services and research into rare diseases and will expand the network of people interested in engaging with the work of the Steering Group.

The Expressions of Interest form can be accessed here. But note the closing date is 5pm on Monday, January 8, 2024. 

Written motivation statements should be attached to emails as a document. Recorded statements should be included in emails as a file link via WeTransfer or other software. 

Please contact [email protected] by January 3 next, if you require assistance in completing the form.

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