IPPOSI

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. This event followed 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 it's 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  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).