Consultation on National Rare Disease Plan

Unique opportunity for patients with rare diseases to shape national plan

Consultation_image
Pictured at Farmleigh (L-R) Tony Heffernan, Bee for Battens, Eibhlin Mulroe, IPPOSI, Avril Daly, GRDO, Helen McAvoy, Institue of Public Health, all members of the Steering Group (Conor McCabe Photography)

11 June 2012 - On Monday the 11th of June, 2012 at 10am, the Department of Health's Consultation Day on a National Rare Disease Plan for Ireland took place at Farmleigh House in the Phoenix Park, Dublin. This event follows the Minister for Health, Dr James Reilly's decision last April to appoint a National Rare Diseases Steering Group in order to develop a national plan for rare diseases. Similar plans are being drafted across the EU following a recommendation by the European Council of Health Ministers which requires Member States to implement national plans before the end of 2013.

Speaking in advance of the event Mr. John McCormack, Chairman of the Taskforce for Rare Diseases and of the Medical Research Charities Group (MRCG) said "Much work has been done to ensure this plan will meet the needs of people with rare diseases and I welcome the level of engagement which the Department has had with patients' organisations thus far. In particular the launch of the online consultation process offers people with a rare disease and their families the opportunity to contribute to the formation of the plan." The online consultation process will last for four weeks and can be accessed by visiting; http://www.hse.ie/eng/services/ysys/Consultation

Eibhlin Mulroe a member of the Steering Group and CEO of The Irish Platform for Patients' Organisation, Science and Industry (IPPOSI) said "the move to include a patients perspective in the process recognises the level of expertise which patients have and their willingness to engage with all the stakeholders. It is good to see that the efforts of the many groups concerned with supporting the individuals and families affected by a rare disease in Ireland and the EU is starting to come to fruition. Establishing and implementing a National Plan for Rare Disease will start to address the marginalisation, frustration and often despair experienced by patients and families of rare diseases."

Avril Daly, Chairperson of the Genetic and Rare Diseases Organisation (GRDO) commented that " Irish patient groups have engaged with stakeholders nationally and internationally for 25 years to advocate for the development of  better systems leading to better health outcomes for patients affected by rare diseases. We welcome the commitment made in the Seanad last March by the Minister to develop a Clinical Care Program for rare diseases. We are hopeful that by including rare diseases in the National Clinical Care Programme and the establishment of a National Rare Disease Office a clearly defined pathway will be developed to enable patients and medical professionals access the correct specialists and centres of expertise, new treatments and management options and information regarding ongoing clinical trials."

Ms Daly who was recently elected Vice President of the European Organisation for Rare Diseases EURORDIS went on to say "Ireland will hold the European Presidency in 2013 which coincides with the deadline for member states to have a national rare diseases plan in place. It is therefore important that Ireland provides strong leadership on the rare diseases issue during its presidency."

Tony Heffernan is a Steering Group member and Founding CEO of Bee for Battens / The Saoirse Foundation
"In the past it has been very difficult for parents to find any information at all about rare diseases. The rarity of some of these disorders means that few doctors have an awareness and parents of course want to know, on a practical level, how they can best help their child. Hopefully this consultation process will give parents an opportunity to input directly into the plan" said Mr. Heffernan.

Notes

  • To view photographs of the event click here

  • As one of the partners involved in the Department of Health's Rare Diseases Consultation at Farmliegh on the 11th of June 2012, the Irish Platform for Patients' Organisations, Science and Industry (IPPOSI) has made available a video recording of the speech given by the Minister for Health Dr James Reilly and the presentations made by Sub-group Chairs; Eibhlin Mulroe, GRDO Chair Avril Daly, Tony Heffernan and Helen McAvoy. View proceedings here:




  • To read the Department of Health press release on the consultation process, issued 14 June 2012, click here

  • The Rare Disease Taskforce is composed of members of the Medical Research Charities Group (MRCG), The Genetic Rare Diseases Organisation (GRDO) and Irish Platform for Patients' Organisations, Science and industry (IPPOSI).

  • Although rare diseases are individually rare, in totality they account for 6-8% of the overall population. - Source European Commission 2009

  • Tony Heffernan is the father of two children who were diagnosed with the Ultra Rare & Fatal Disease, Late Infantile Battens Disease. The Heffernans' children, Liam (4)  who recently participated in a medical treatment trial in New York and Saoirse who lost her battle for life in January 2011 aged just 5, provided him with the motivation participate in the Steering Group. Tony is also President of Batten Disease International Alliance

  • Avril Daly was recently elected as the Vice President of European Organisaton for Rare Diseases (EURORDIS) www.eurordis.org

  • The Steering Group on Rare Diseases appointed by the Ministers includes;

Dr John Devlin (Chair), Department of Health

Prof Eileen Treacy, Health Service Executive

Ms Eibhlín Mulroe, The Irish Platform for Patients' Organisations Science and Industry

Dr Helen McAvoy, Institute of Public Health in Ireland

Mr Owen Metcalfe, Institute of Public Health in Ireland

Ms Avril Daly, The Genetics Rare Disorders Organisation

Mr John McCormack, The Medical Research Charities Group

Mr Tony Heffernan, Patient Representative (Bee for Battens)

Ms. Caroline Kelly, Department of Health

Ms. Louise Kenny, Department of Health

Ms. Paulette O'Reilly, Department of Health

Dr Deirdre Mulholland, Health Information and Quality Authority

Mr Shaun Flanagan, Health Service Executive

Dr Catherine Gill, Health Research Board

Dr Geraldine O'Dea, Irish Medicines Board

Ms.Louise Kenny, Department of Health