News and Events

Rare Disease in Ireland – Your Experience

Following on from our survey of patient organisations, GRDO is now gathering information on the experiences of people in Ireland living with rare conditions.  Together with the Medical Research Charities Group (MRCG) and the Irish Platform for Patients' Organisations, Science and Industry (IPPOSI) and their patient representatives, we will use this information to assist the National Rare Diseases Taskforce ('Towards 2013 -  the National Plan for Rare Diseases') to engage with the Rare Diseases Steering Committee of the Department of Health.  

This initiative aims to ensure that the voices of individuals affected by rare diseases are heard by the decision makers in health and social care.

To complete our survey Rare Disease in Ireland – Your Experience - click here

Rare Disease Day 2012

Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at the international level and the National Alliances of Patient Organisations at the national level.

February 29, 2012 marks the fifth international Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 25 European countries. On this day hundreds of patient organisations from more than 40 countries worldwide are organsing awareness-raising activities converging around the slogan “Rare but strong together”. Rare Disease Day 2012 website - click here

Rare Diseases News

The second edition of 'Rare Diseases News' covering January to March 2012 is now available. This newsletter has been published by a group representing patient advocacy groups and industry, who form part of a taskforce supporting the development of a National Plan for Rare Diseases.  To download click here

GRDO Patient Organisation Survey

The Genetic and Rare Disorders Organisation (GRDO) is currently gathering information relating to patient support and advocacy organisations operating in Ireland for people with rare conditions.  GRDO, together with the Medical Research Charities Group (MRCG) and the Irish Platform for Patients' Organisations, Science and Industry (IPPOSI) and their patient representatives, will use this information to assist the National Rare Diseases Taskforce (‘Towards 2013 -  the National Plan for Rare Diseases’) to engage with the Rare Diseases Steering Committee of the Department of Health. 

The survey can be completed online at the following link: http://www.surveymonkey.com/s/K82YY8Y

Rare Diseases News

The first edition of 'Rare Diseases News' covering October 2011 to December 2011 is now available. This newsletter has been published by a group representing patient advocacy groups and industry, who form part of a taskforce supporting the development of a National Plan for Rare Diseases.  To download click here 

GRDO appointment

Kathy Tynan has been appointed to the position of Information and Development Officer (part-time) at the Genetic and Rare Disorders Organisation (GRDO).  More information - click here

Rare Disease Day 2011

Rare Diseases Day

This year Rare Disease Day took place on Monday 28th February. GRDO hosted an event in The Royal College of Physicians which provided a forum for those affected by rare disorders to listen to experts and participate in an interactive discussion on the topics: Diagnosis, information to the patient and genetic counselling, Orphan Drugs and Pre-implantation Genetic Diagnosis

For more info see: Rare Disease Day Events


See EURORDIS Website: www.eurordis.ie 

Europlan

The Europlan Ireland Conference of 20 January 2011 welcomed over 160 participants from all stakeholding groups.

The Conference, which was held in Farmleigh House is "an important milestone" in the development of a national health strategy for rare disease patients, according to Dr John Devlin, Deputy Chief Medical Officer at the Department of Health. Speaking at the event, Dr Devlin said the groundwork had been laid for discussion of all the main issues surrounding rare diseases. These include: developing centres of expertise, development of research on rare diseases; access to therapies and treatments and patient empowerment.

For more info and Podcasts - click Europlan

European Strategy on Rare Diseases is Adopted by Health Ministers of the EU

A European strategy that calls upon Member States to implement national plans for rare diseases, before the end of 2013, was adopted by the Council of Health Ministers of the EU today (Tuesday, June 9, 2009). Download full report

Importance of Research on Rare Diseases and Orphan Drugs

There are significant moral, scientific, economic and policy imperatives for conducting research into rare diseases.

A rare disease as defined in the EU Orphan Medicinal Products Regulation (2000) is a disease with an instance of less than five in 10,000 of the population. Download full report.


Recommendation on action in the field of rare diseases

An "Employment, Social Policy, Health & Consumer Affairs" council meeting, organised by the Council of the European Union took place on 9th June 2009 in Luxembourg. Click  here to download the Councils Recommendations on action in the field of rare diseases.

Gallery

Joan Brosnan Niall QuinnDeirdre DeBurcaRare Diseases Day Launch 2009