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1st Irish Rare Disease Plan, Consultation

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Consultation on a National Rare Disease Plan

The Department of Health is currently developing the first National Rare Disease Plan for Ireland. This plan will make recommendations for enhancing the quality of life of people experiencing rare diseases. The plan will cover aspects of research, diagnosis, treatment and patient empowerment.

Tony Heffernan, founder & CEO of The Saoirse Foundation is the Patient Representative appointed to the National Steering Group, as appointed by the Minister for Health James Riley. Tony is also the Chair of the Sub Group for Patient Support & Empowerment, who with his team delivered the 1st draft of the Sub Groups Submission on Feb 28th 2012.


A Formal Consultation day shall take place on June 11 in Farmleigh House, Phoenix Park,       9.30am – 4.30pm



Consultation Day Programme

 9.30am         Registration

10.30am        Welcome                 Dr James Reilly TD, Minister of Health

10.45am        Subgroup Reports                               

Steering Group Chair Dr John Devlin, Deputy Chief Medical Officer, Department of Health


10.50am : Research and Information  Subgroup                  

Dr Helen McAvoy (Chair), Senior Policy Officer, The Institute of Public Health in Ireland


10:55am : Centres of Excellence Subgroup, 

Ms Avril Daly (Chair) , Chief Executive, Fighting Blindness/GRDO


11:05am : Orphan Drugs and Technologies Subgroup          

Ms Eibhlin Mulroe (Chair), Chief Executive Officer, IPPOSI


11:10am : Patient Support & Empowerment    

Mr Tony Heffernan (Chair), Bee for Battens, The Saoirse Foundation


11.15am        Coffee Break


11.30am        Workshops 1

1.00pm          Lunch

2.00pm          Workshops 2

3.30pm          Feedback from workshops on recommendations and priority areas to be                                              

                        addressed in the plan, 

                        Chair:                        Mr Owen Metcalfe, Director, Institute of Public Health in Ireland


4.00pm          Closing Remarks

Dr Barry White, National Director for Clinical Strategy and Programmes       Health Service Executive




Theme 1 – Data and Research


  • Where next for rare disease registries?
  • A roadmap to develop research on rare diseases in Ireland.

Theme 2 – Infrastructure

  • Towards a national rare disease office – when, where, how?
  • Centres of Expertise for rare disease in Ireland – aspirations and concerns.

Theme 3 – Cooperation and working across sectors 

  • What role for patient organisations in the plan?
  • Getting the most out of cross-border working on rare diseases – clinical and research networks
  • Beyond health services - working across sectors (social, financial, educational and disability services) to deliver fair outcomes for rare disease patients.

Theme 4 – Diagnosis

  • Genetic testing for rare disease – developing services to meet changing needs
  • Improving outcomes for rare disease patients through professional development of clinicians in primary and hospital care.

Theme 5 – Treatment

  • Prompt access to effective orphan drugs and technologies –  a new paradigm
  • Patient- centred care pathways for rare diseases. 

Altenatively you can also give your opinion online: 

The HSE National Advocacy Unit is supporting the Department of Health to consult with a broad range of stakeholders with an interest in rare diseases. If you have a rare disease or care for someone with a rare disease, please share your views. We would also welcome the views of clinicians, health care personnel, researchers and others whose work is related to rare diseases.


We need your feedback. Please click on the link below. It will open the form on a new page.

Please send your input even if you only feel you can respond to a small number of questions.

Two further documents have been developed to support your input:
(1)    Glossary of Terms.pdf to help you understand some of the complex terms used (Size 48KB)
(2)    A Frequently Asked Questions (FAQ) which provides further background information. (Please note the FAQ will be available on Tuesday, 12th June 2012.)

If you need any assistance completing this questionnaire, please contact the HSE National Advocacy Unit 045 880400.

Please note that this consultation ends on Friday, 13 July 2012.  

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