Jerry Buttimer (Fine Gael)

I thank the Cathaoirleach for allowing me to place this motion before the House. I welcome the Minister of State and compliment his fortitude on this marathon day in the House.

The motion before us is about the need for a national plan on rare diseases. I pay tribute to the Irish Platform for Patients' Organisations, Science and Industry, IPPOSI, which has done considerable work alongside other umbrella bodies and organisations. According to IPPOSI, "to be considered rare a condition should not affect more than a limited number of people out of a whole population". Herein lies the difficulty. Given the rarity, fewer voices are calling for help. For this reason, we need a national plan for rare diseases. I pay tribute to Deputy Stanton who raised this matter with the Minister for Health and Children in the Lower House last week. It is important we create awareness.

IPPOSI has identified three large hurdles faced by patients with rare diseases, those being access to correct diagnosis, a lack of information and scientific knowledge and access to treatment if it exists. Living in the 21st century, it is important we recognise the steps humankind has taken. We put a man on the moon, yet there are people who are unable to get an answer as to why they are sick and why they are unable to identify what is wrong to find a treatment. As we all know, delays in access to treatment have a detrimental effect in some cases, setting back patients' recovery. It is important we provide a national plan that outlines practical solutions, puts research at its heart, allows patients access and provides for them.

Speaking at a recent conference entitled Patients and Researchers: Partners for Life, the Minister of State, Deputy Áine Brady, recognised: "that for rare diseases, the plans and strategies have to integrate the various elements of care including diagnostics, treatments, rehabilitation, access to drugs and information and that this will involve a national plan to bring all these strands together". We need a cohesive plan and I urge the Minister of State to put one in place as a matter of urgency. Those living with rare diseases live with uncertainty and the unknown. We must provide them with as much help and as many practical outlets as possible to make their lives the best they can be.

According to the figures provided by IPPOSI, 3% to 5% of our population, approximately 140,000 people, are affected by rare diseases. Professor Eileen Treacy stated: "Inherited metabolic disorders are 2-3 times as prevalent in Ireland as they are in the UK". This statement underlines our need for a national plan for those living with rare diseases.

In June, the EU Council of Ministers recommended a concerted action across the EU by 2013. Given the conference speech given by the Minister of State, Deputy Áine Brady, it seems that the plan is only in preparation. In the Lower House last week, the Minister for Health and Children discussed the need for a plan and preparation. Many organisations and groups aiding those living with rare diseases in their day-to-day lives are in serious fear. We should be able to assist in the sourcing of treatment but we cannot in many cases because there is no national plan. I am asking the Minister of State, as the Government's representative, when the plan will be published and whether it will fully address the three hurdles identified by IPPOSI.

As with all aspects of life, we must provide hope, assistance and, most of all, knowledge. Every body of work and knowledge on rare diseases has, at its core, the demand for greater collaboration. We must identify and link centres of expertise in the field of rare conditions to assist people. I hope the Minister of State's response will contain a positive outcome and that a national plan for people with rare diseases will be delivered.