Welcome to the GDRO website
The Genetic and Rare Disorders Organisation (GRDO) is a non governmental organisation acting as a national alliance for voluntary groups representing the views and concerns of people affected by or at risk of developing genetic or other rare disorders. Read more ...
Welcome to National Clinical Programme for Rare Diseases
A ‘rare disease’ is defined in Europe as a life-threatening or chronically debilitating disease affecting no more than 5 people per 10,000. There are an estimated 6-8,000 known rare diseases affecting up to 6% of the total EU population, (at least 30 million Europeans), and perhaps up to 300,000 Irish people during their lives.
Conditions such as Cystic Fibrosis, Haemophilia and PKU are familiar to many. There are many other rare and ultra-rare conditions. However, the biggest bulk of the presenting conditions are accounted for by about 350 conditions. Approximately 80% of these conditions are genetic and although a high proportion present in childhood, many also present for the first time in adulthood.
In Europe, it is recognized that accurate and timely diagnosis and access to treatment for individuals with rare diseases are severely hampered by a few major issues. These include lack of recognition and visibility in health care systems leading to difficulties in coordination and communication, the lack of national policies with limited and fragmented resources for individuals with rare diseases, with often the lack of specific clinical expertise for the condition in the specific country, and very highly fragmented clinical research leading to inefficient use of limited resources.
As part of the Irish Europlan 2011 Conference the first step of the national Rare Disease Plan public engagement process began. The primary concerns expressed by patients, families and the medical professionals were the prolonged and difficult diagnostic journey and the lack of information and lack ofawareness of rare diseases in the community. These difficulties were later reflected in the on line public consultation, ‘Have your say’(HSE 2012).
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Opening Statement by Minister Reilly at the Joint Committee on Health and Children April 3rd 2014
Minister James Reilly opening statement to the Joint Committee on Health and Children included some promising news for those affected by rare and genetic conditions.
"You've asked that I address the issue of a national office for Rare Diseases. As this Committee is aware, Rare Diseases place a significant burden on patients and their families. The important work of developing the National Plan for Rare Diseases continues and is close to being finalised. This policy framework relates to the prevention, detection and treatment of rare diseases based on the principles of high quality care, equity and will be patient centred. The Plan will deal with the prevention, diagnosis and care of people with rare diseases; enhancing access to orphan drugs and technologies; responding to the needs of patients with rare diseases and their carers; and research into the area of rare diseases. My Department’s Steering Group is also considering for its report the development of a national office for rare diseases. Its purpose would be to facilitate and support the HSE in the coordination of Centres of Expertise for rare diseases, both nationally and internationally. This office could act as a national point of reference on services, diagnostics, on care pathways and on information relating to rare diseases. The report by my Department on recommendations for dealing with rare diseases, including the establishment of a national office, is being finalised and the Department’s officials have met with the Health Service Executive about the implementation of the report. In the meantime, the HSE is developing a business case about the establishment of such an office.
In addition, the HSE has established a National Clinical Programme for Rare Diseases. A National Clinical Lead has been appointed and a programme manager is in place. The Programme aims to improve and standardise patient care for individuals affected with rare diseases in Ireland, by increasing detection and prevention, facilitating early timely diagnosis, intervention and coordination of care, and increasing awareness, information and support. The Programme has already started its work in mapping out current services and developing care pathways for patients with rare diseases."
Health Committee marks National Rare Diseases Day 2014 as it meets with groups dealing with rare diseases. Link to site
EURODIS Rare Disease Day 2014 Policy Event seeks to Improve Access to Rare Disease Care Link to article
IPPOSI update on Rare Disease Day 2014 Link to site
EUPATI Ireland NLT group to host information morning on 26TH March 2014 Link to information on course
Dear IPPOSI Members,
We are pleased to announce you that the application period for the EUPATI training course will open on Monday 10 March 2014 via the EUPATI website. This is an exciting and unique opportunity offering patient advocates expert training in medicines research and development, specifically tailored for them. Launching this application process is a major milestone for the EUPATI project. Please click on the link above for more information Expert Patient Training Course. In addition to the application form, you will also find a detailed guide for applicants as well as Q&A document. Please note that the closing date for applications is 20 April 2014.
With this in mind the EUPATI Ireland NLT Group will be hosting a 2 hour Information Morning on Wednesday 26th March 2014 for any patient representative interested in applying for the above. This event will start with registration at 10.30 and run to 1.00, city centre venue to be confirmed.
Rare Disease Day 2014 Briefing
Wednesday February 26, 2014
2:00pm – 3:30pm
The Oak Room, Mansion House, Dublin 2
The event will feature updates on the progress being made to establish a strategy for rare diseases in Ireland. Dr John Devlin, Deputy Chief Medical Officer in the Department of Health wil provide an update on the development of the National Plan for Rare Diseases. Prof Eileen Treacy, Clinical Lead for Rare Diseases will update attendees on the National Clinical Programme for Rare Diseases. Finally, Mr Philip Watt will provide an overview on the work to date of the Rare Disease Task Force. All are welcome to attend the event.
It is free of charge but we would ask you to register in advance by emailing firstname.lastname@example.org or calling Anne on 086 022 9262
For more information about the Genetics and Rare Disorders Organisation please visit www.grdo.ie
Rare Disease Day 2014 Link to site
This year sees a joint Irish North / South collaborative event happening in Belfast. Following last year's event in Dublin City Hall, the return match is scheduled to take place in Riddell Hall, Queen’s University, Belfast, on 28 February 2014. The International Theme for the Day is Join Together for Better Care. We hope this second Joint North South Event will continue to add extra impetus to cross border co-operation in health issues. Join us on the day to hear what is going on; to contribute your thoughts and views; to meet old and make new friends and colleagues.The OUTLINE Programme is:
10.30-11.00 REGISTRATION: Tea/Coffee; scones
11.00-11.05 Welcome: Christine Collins, Chair, NIRDP
11.05- 11.20 European and UK Context: Alastair Kent, O.B.E. Chair, RDUK
11.20-11.50 Northern Ireland Rare Disease Plan & Irish Rare Disease Plan: Key Note Speakers
11.50- 12:30 Cross Border Collaboration: Next Steps: Q & A and Panel Discussion: “What do you see as the next steps forward?” Chair Avril Daly EURODIS; Panelists: Families and Clinicians working across Ireland
12.30- 13.30 LUNCH: Musical/Children’s events
13.30- 14.30 Joining Together for Better Care: Examples of good practice: Presentations and Discussion: Chair Alison Wilson (MPS)
14.30-15.00 Poster Competitions Award of Prizes: 3 Categories Children/Young People (under 18)
15.00 KEY POINTS & CLOSE Philip Watt, Chair, Rare Disease Task Force Ireland
TICKETS ARE FREE! Request Here
Rare Disease Day 2014 Offical Video Link to Video
The Rare Disease Day 2014 video is now available in seven different languages for you to enjoy and to share. With the focus on Care this year, the 2014 video poignantly demonstrates the kind of care people with rare diseases need and deserve, and the ways family members, health professionals, and the entire rare disease community are working together to provide care. Created in Barcelona by production company These Glory Days, the Rare Disease Day 2014 video is accompanied by the music of Delorentos, who generously offered the use of their aptly named song Care For
Rare Disease Day 2013An All Ireland meeting of patient organisation, science and industry to mark International Rare Disease Day and the Irish Presidency of the Council of European Union was held in City Hall Dublin on 28th of February. The theme was Rare Disorders without Borders and was organised by the Rare Disease Taskforce, bringing together GRDO, Irish Platform for Patient Organisation Science and Industry (IPPOSI) &the Medical Research Charities Group (MRCG), along with our Northern Irish counterparts the Northern Irish Rare Disease Partnership (NIRDP) and Rare Disesase UK. This was in fitting with the cross border theme of the event to promote innovation and co-operation in the field of rare disease between Ireland and the UK, north and south, east and west and accross the EU. IPPOSI were the leading partners in organising and co-ordinating this event and a big acknowlegement to them.
A webcasting of the event is available online, to view click here
Official Rare Disorders without Borders video, to view click here
Patient perspective video, to view click here
Posters on show at the event, to view click here
Photostream of the event, to view click here
An Easy Guide for Rare Disease was also launched at the event and has been produced to raise awareness about the challenges of living with a rare disease through patient stories and to highlight the priorities that need to included in the forthcoming National Plan for rare Disease (NPRD). To read more, click here
National Rare Disease Plan Consultation
On Monday, 11 June 2012, the Department of Health's Consultation Day on the National Rare Disease Plan took place at Farmleigh House in Dublin. An online consultation process was also launched, offering all those affected the opportunity to contribute to the formation of the plan. 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 this 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.
To read more about the consultation event at Farmleigh - click here
Rare Disease Day 2012A new promotional video for Rare Disease Day 2012, which GRDO helped co-ordinate in Dublin, features six people from Ireland, each with a different rare condition.
Latest newsStatement By Prof. Eileen Treacy at Joint Health Committee Meeting27th February 2014 February 2014 - See Statement
Kids with rare diseases to benefit from new genetic tests Summary: HRB-funded researchers at Crumlin Children's Hospital and University College Dublin (UCD) have developed new genetic tests that will speed up diagnosis of rare diseases in children and help avoid the need for invasive procedures. The tests will be launched on European Rare Disease day (February 28, 2014) More Information Here
The European Commission cross-border care The European Commission is contracting a service provider to analyse the current situation for EU citizens regarding free movement, and this includes patients' rights to cross-border care. EURORDIS are writing a note to the European Commission on difficulties that patients have experienced and are asking for specific cases of issues patients have in accessing cross-border care. February 2014 - More Information Here
Holy $%#@! Rare Diseases and Disorders Have Become Vogue! From Near Invisibility to the Media Spotlight! February 2014 - See Blog
Updated Staffing of Medical Genetic Centres in Europe, October 2013 - click here
Rare Disease Day view online, 1 March 2013 - click here
Rare Disease Day Posters view, 1 March 2013 - click here
Rare Disease Day Patient Video, 1 March 2013 - click here
Eurordis Rare Disease Video, 11 February 2013 - click here
Staffing of Medical Genetic Centres in Europe, 4 February 2013 - click here
NCMG 5 year report, 4 February 2013 - click here
Rare Disease Day 2013 28th of Feburary, Registration now open - click here
Epirare Survey on rare disease patient registries, 14 January 2013 - click here
IPPOSI launches information campaign on clinical trials, 17 September 2012 - click here
GRDO issues joint statement on cutbacks to disability services, 17 September 2012 - click here
GRDO seeks information from patient organisations re cross border working, 11 September 2012 - click here
Video highlights of National Rare Disease Plan Consultation Event at Farmleigh available, 7 August 2012 - click here
Third edition of the quarterly e-newsletter published by the Rare Diseases Taskforce: 'Rare Diseases News', April-June 2012, now available - click here
Share your views and inform the first Rare Disease Plan for Ireland, 11 June 2012 - click here
Crisis in medical genetics services impacts those affected by rare disease, 11 June 2012 - click here
GRDO Chair Avril Daly elected Vice President of EURORDIS, 29 May 2012 - click here
6th European Conference on Rare Diseases and Orphan Products, 23-25 May 2012 - click here
11 June Consultation Day on National Rare Disease Plan, 30 April 2012 - click here
HRB hosts workshop on rare disease research in Ireland, 26 March 2012 - click here
GRDO welcomes commitment to develop clinical care programme for rare diseases, 7 March 2012 - click here
Seanad debate on rare disease, 7 March 2012 - click here
GRDO addresses Joint Oireachtas Committee, 29 February 2012 - view here
GRDO survey highlights need for National Rare Disease Office, 28 February 2012 - click here
Promotional video for Rare Disease Day 2012 launched, 13 February 2012, featuring six people with rare conditions in Ireland - click here
Please complete our survey, launched, 20 December 2011: Rare Disease in Ireland – Your Experience - click here
Rare Disesase Day 2012 website launched, 20 December 2011 - click here
Second edition of the quarterly e-newsletter published by the Rare Diseases Taskforce: 'Rare Diseases News', Jan-Mar 2012, now available - click here
GRDO Patient Organisation Survey launched, 5 December 2011 - click here
First edition of the quarterly e-newsletter published by the Rare Diseases Taskforce: 'Rare Diseases News', Oct-Dec 2011, now available - click here
GRDO appoints Information and Development Officer, 24 October 2011. More information - click here
Report on event hosted by GRDO for International Rare Disease Day, 28 February 2011 - click here
Europlan Ireland Conference 20 January 2011: information and podcasts - click here
Newsletter 2011-2012 - click here
Newsletter 2010 - click here
Newsletter 2009 - click here
Newsletter 2008 - click here