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Rare Disease Day 2020!

Updated: May 29, 2020

Today is Rare Disease Day 2020! Read 'An Easyguide to Rare Diseases in Ireland For Government, the General Public, Media and Political Parties Published by Patient Groups concerned with Rare Diseases and Consensus for Action' by visiting: To see a feature from our member, Seán O'Kelly, flick to page 43 of the Easyguide!

Rare Diseases Ireland: Priorities for the Programme for Government 2020 and beyond

Rare Diseases Ireland (RDI) is the national alliance that advocates for the rare disease community in Ireland - spina bifida is classified as a rare disease. As part of Rare Disease Day 2020, an Easyguide to Rare Diseases was launched this week featuring rare disease profiles such as spina bifida. The guide includes key requirements for Government, 2020 as listed below:

  1. Full implementation of the National Rare Disease plan (NRDP).

  2. Additional resources for prevention, diagnosis and care.

  3. Additional resources and responsibilities for the National Rare Diseases Office.

  4. To improve access to and reimbursement times for new and innovative medications for rare diseases.

  5. Adequate funding of key clinical genetic services.

  6. Leadership and infrastructure in Genetic and Genomic Medicine.

  7. Sláintecare mainstreaming and targeting.

  8. New-Born Screening. Ireland is lagging behind other countries in respect of new-born screening.

  9. Health cost and social service supports.

  10. Independent Living.

For more information see

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