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 ...
National Rare Disease Plan New NRDO Site National Rare Disease Office Microsite Link

Rare Disease Day 2016 Thank You for Another Successful Year....

RDDStats

EurordisCare Survey Programme -Update

Following the EurordisCare Survey Programme which gathered the perspective of 12 000 patients, EURORDIS is now launching its new survey research programme : the Rare Barometer programme. This initiative aims to make the voice of rare disease patients stronger by improving the understanding of their needs and expectations and giving solid evidence about it. EURORDIS wants to work as closely as possible with its members throughout the project. It will cover Europe at large (48 countries) and gather the perspectives of people living with a rare disease, their families and patient representatives. This project is dedicated to becoming an advocacy tool for EURORDIS and its members. Please note that the results of the surveys will be available by country.

In order to carry out surveys on a regular basis and to give scientific consistency to the project, EURORDIS is creating a community of people living with rare diseases named Rare Barometer Voices. It will be made up of patients that are willing to take part in surveys on a regular basis. This panel will be owned solely by EURORDIS and will strictly adhere to the European data protection standards to ensure data confidentially. The project has been approved by the CNIL (French data protection authority). EURORDIS needs you to encourage your members to participate in Rare Barometer Voices so that the diversity of the rare disease patients is represented in the community.

For more detailed information about the project, Press Release Here

Here are several ways to participate in this initiative as a patient organisation:
  • Share the topics and analysis of studies and surveys that your organisation has previously carried out to help us base the surveys on existing knowledge;
  • Fully participate in this novel and innovative programme and take part in the design of the project, either the overall project or by survey;/li>
  • Encourage your members to register to Rare Barometer Voices. You can download an email template to encourage your members and their families to become part of this initiative. You can also add the registration link to your website. /li>
  • Share the dedicated webpage (eurordis.org/voices) on social media using #RareBarometer

Rare Disease Day 2016 in Dublin a huge thank you

to all the speakers and guests who took part in a very successful Rare Disease Day 2016 in Dublin Castle. Presentations here

Major Rare Disease Conference Hears Ireland Trails Europe in Provision of Genetic Services...

Critical Need for Government Action - Delays of more than 15 months for hundreds of families in accessing genetic services - Read more here
Conf
Rare

National Rare Disease Office - Website and 1800 line

The NRDO (National Rare Disease Office) now has 1 800 line and www.rarediseases.ie for the NRDO. Please find attached new A5 leaflet and A4 information sheet with new contact information. Please feel free to distribute. There are also some laminated copies of the A4 information sheet if these is any group that would like one for a public bulletin board etc.
Link to Website

European Reference Networks: January news

There have been many developments in the past months that have brought us further along the path to making European Reference Networks (ERNs) a reality in the EU. Highlights here :

Save the Date 29th February 2016

Rare Disease Day 2016 is a wordwide event. The main objective is to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare disease. In Ireland, this event is organised by the 3 umbrella groups - MRCG (Medical Research Charities Group), GRDO (genetic and Rare Disorders Organisation and IPPOSI (Irish Platform for Patient Organisations, Science and Industry). The theme for Rare Disease Day 2016 is The Patient Voice.

RDD 2016
Register Here

Launch of new website for Rare Disease Day 2016!

Rare Disease Day 2016 will take place on the 29 February 2016, a rare day in itself! The main objective of the Day is to raise awareness of rare diseases and the impact they have on people's lives.

Take a look at the new RareDiseaseDay.org website!

2016 marks the 9th edition of this patient-driven movement. Thousands of events will take place across all continents, reaching people living with a rare disease and their families around the world.

EURORDIS, together with a network of 37 national alliances of patient organisations, calls on patients, families, patient organisations, carers, healthcare professionals, decision makers, industry, researchers and anyone with an interest in rare diseases to help put rare diseases in the spotlight!

Learn more about the Rare Disease Day 2016 theme Patient Voice and slogan Join us in making the voice of rare diseases heard and find out how you can get involved in Rare Disease Day 2016.

MORE THAN 300 000 EUROS FOR RESEARCH ON ANGELMAN SYNDROME

The Angelman Syndrome Alliance (ASA) supports research on Angelman syndrome with up to 300 000 Euros to be awarded at the next International Angelman Syndrome Scientific Conference. The Angelman Syndrome Alliance is (currently) an initiative of the following parent organisations: AVO (Austria), ASB (Belgium), ASFA (France), Angelman e.V. (Germany), AIA (Ireland), Israeli Angelman Syndrome Foundation (Israel), ORSA (Italy), PWAV (Netherlands), Angel (Portugal), ASSERT (United Kingdom), and the Nina Foundation (consortium organization on AS science). Their mutual aim is to join forces and funds to increase the financial support of dedicated research projects and thereby intensify research on Angelman Syndrome.

Call for Applications for Research Grants on Angelman Syndrome

Call will be open between the 25th November 2015 and the 24th of January 2016

For More Details and Application process here

DFI Election Campaign - Disable Inequality

With General Election 2016 fast approaching, now is the time for people with disabilities and their families to get active on issues that affect them. We need people with disabilities voices to be heard nationwide in the various debates around the 2016 General election. This is not only because 1 in 8 Irish people have a disability but, more importantly, because they are deeply affected by so many of the issues at the heart of political debate. Disability Federation of Ireland are encouraging you to support and get involved with their election campaign, ‘Disable Inequality’. The campaign is all about YOU, and YOUR story of living with a disability. Election 2016 is an opportunity to create a fairer and more inclusive society where people with disabilities are treated on par with other Irish citizens.

READY TO TAKE ACTION

• DFI are seeking people with disabilities and their families to share their own experiences. By telling your own story we can highlight the everyday difficulties and challenges that people with disabilities encounter throughout Ireland. Your story can be submitted in any format, it could be a photograph, a tweet, a video, text, a Facebook post. This doesn’t have to be a long story you could tell your story in 3-5 sentences just be sharing who you are, an issue you want to raise and posing the question ’Does that seem fair to you?’ You can find more information on the website www.disableinequality.ie

• We need to promote the Disable Inequality message as wide as we can. You can do this by liking and sharing the website www.disableinequality.ie. Please share on Facebook, Twitter and too as many people as you can.

• DFI are launching the ‘Disable Inequality’ campaign in early January and want as many people as possible to attend. The more people that attend the launch, the louder the voice of people with disabilities leading into the election. If you would like to attend please contact Jacqueline at jacquelinegrogan@disability-federation.ie

By working together and building the voice of people with disabilities in Ireland we have a real chance to bring about change in 2016. Together we can #disableinequality!

Disable Inequality

GRDO are supporting this campaign because rare diseases are significant as a cause in sensory, physical and intellectual disabilities. One story at a time, Disable Inequality is making equality a defining issue in Election 2016. More than 600,000 people are living with a disability in Ireland. Two in three of us know or care for an immediate family member, a friend or a neighbour living with a disability. Disability is the biggest issue of our time. But, it does not receive the political leadership, attention and commitment needed to make Ireland a truly modern, truly equal Republic. Taking a bus, enrolling in school, finding a job, going to a gig, keeping warm: Almost everything is more difficult and has more barriers if you are living with a disability. Does that seem fair to you? In the coming weeks, we will be collecting stories of inequality – your stories –from across the country. We will use this volume of evidence to show political leaders and your candidates that it is time to end discrimination against people living with disability. Together we will make Ireland a fairer place to live and make disability a priority in the new Programme for Government.

Visit website and join the campaign for a fairer and more equitable Ireland

Rare Diseases Website Developing the Parent-to Parent content of a Rare Disease Website in Ireland (RD-WEB P2PS)

In 2014 parents participated in a previous study examining the development for the first Irish website for parents of children with rare conditions. A compelling finding from that study was parents’ need for a live parent-to-parent support feature to be included in the proposed development of any website. Building on this, this study that was funded by the Irish Research Council and in collaboration with the Saoirse Foundation, investigated with parents’ the idea of a live parent-to-parent support feature. The two studies are timely and coincide with the National Rare Disease Plan (DoH 2014) and the establishment of the National Rare Diseases Office (2015). Read More....

An exploratory study to further explicate parents’ requirements to effectively provide parent-to-parent support on an Irish website for parents of children with rare conditions Read Study here

The Rare Disease Day 2016 theme and slogan: Patient Voice - Join us in making the voice of rare diseases heard - On 29 February 2016

2016 marks the ninth year that the international rare disease community celebrates Rare Disease Day. On 29 February 2016, people living with or affected by a rare disease, patient organisations, politicians, carers, medical professionals, researchers and industry will come together in solidarity to raise awareness of rare diseases....Read more

eHealth Ireland

Bringing improved population wellbeing, health service efficiencies and economic opportunity through the use of technology enabled solutions...website

ORPHANET

The portal for rare diseases and orphan drugs. Link to Ireland’s orphanet page with contact details....website

EURORDIS is offering patient fellowships for 40 patient Advocates

EURORDIS is offering patient fellowships for up to 40 patients’ advocates to attend the 8th European Conference on Rare Diseases & Orphan Products (ECRD 2016) taking place 26-28 May 2016 in Edinburgh, UK.These fellowships aim at empowering patients’ advocates by offering a platform for networking opportunities, access to information and sharing experiences...Patient Advocates Fellowship Programme

Wiring the Brain

Genome-wide association studies (GWAS) have been highly successful at linking genetic variation in hundreds of genes to an ever-growing number of traits or diseases. The fact that the genes implicated fit with the known biology for many of these traits or disorders strongly suggests (effectively proves, really) that the findings from GWAS are “real” – they reflect some real biological involvement of those genes in those diseases. (For example, GWAS have implicated skeletal genes in height, immune genes in immune disorders, and neurodevelopmental genes in schizophrenia) ...read more

Rare Disease Day social media webinar hosted by Robert Pleticha

On 25th November at 16:00 (15:00 GMT), there will be an exclusive Rare Disease Day social media webinar hosted by Robert Pleticha, RareConnect Project Manager at EURORDIS. Watch this event if you want to know all the best hints and tips of how to use Facebook and Twitter to activate your community and build excitement for your event.

More information here

Orphanet Ireland is now hosted by the National Rare Disease Office

Orphanet Ireland is now hosted by the National Rare Disease Office, located at the Mater Misericordiae Hospital, Eccles Street, Dublin 7. .
More information here
If you have a query about registering your activity (expert centre, patient support group or research) on Orphanet, please contact us :Here

Health Minister Simon Hamilton has announced £3.3million investment to create a Northern Ireland Genomics Medicine Centre (NIGMC) that will provide rare disease patients with a much earlier and more accurate diagnosis

Thursday, 29 October 2015

More information here

The GRDO AGM will take place on Monday 19th, October 3.30 – 5pm at the offices of Fighting Blindness, 3rd Floor, 7 Ely Place St Stephen’s Green

The landscape in relation to genetic and rare disorders is a fast-changing one and of increasing importance in Ireland where the level of awareness and knowledge of rare diseases and the medical and social needs of the rare disease community remain at a critically low level.

With the publication last year of the National Rare Disease Plan for Ireland 2014-2018 and the opening this year of the National Office for Rare Diseases GRDO’s continuing work in this area will focus on implementation of the national plan. It is our belief that individual patients and patient groups can play an important role in achieving the aims and objectives of the plan as outlined in its 48 recommendations and working in collaboration with other stakeholders we can together effect real and lasting change for all those affected by rare and genetic disorders living in Ireland.

GRDO would encourage everyone to familiarise themselves with the plan and bring it to the awareness and attention of your local TD’s and political representatives especially in the run up to the general election. The publication of the plan and the opening of the RD office whilst encouraging by no means guarantees that the recommendations will be implemented. Those of us in the rare disease community need to give our full support to the individuals and organisations that continue to work tirelessly for much needed change in this area.

The link to the National Rare Disease Plan is here and some information on Europlan II Ireland can be found here
Further information / policies on rare disease can be found here
Application for GRDO membership can be found here...... download form

It is with great sadness that GRDO Ireland has learned of the untimely passing of the CEO of MDI Joe T Mooney.

GRDO would like to express sincere sympathies to Joe's family, friends and colleagues in MDI and the wider disability community GRDO. He was a loyal and valued friend who worked tirelessly for the members of Muscular Dystrophy Ireland and someone whose advocacy efforts reached far beyond his own members. He will be sadly missed by many.
A book of condolences has been opened at Muscular Dystrophy Ireland Head Office at 75 Lucan Road, Chapelizod, Dublin 20, for those who wish to pay their own personal tributes.

EUROPLAN II - Dublin, Sept 7th 2015

This event, hosted by IPPOSI, GRDO and MRCG focused on the challenges experienced to date on the implementation of the Irish National Rare Disease Plan (2014-2018) and on how the plan elements can be turned into a reality that positively impacts on the lives of people living with a rare disease.
More Information here.

Launch of Rare Diseases International, the Global Voice for Rare Disease Patients

More information here

National Rare Disease Office launched

More information here

Genetics in Modern Medicine – the Future is Now. Kevin Mitchell

“The effects of genetic mutations are not restricted to what we typically think of as rare disorders, however. Discoveries over the last several years are illustrating their central role in much more common disorders, such as epilepsy, autism, schizophrenia, Alzheimer’s and Parkinson’s disease, many cancers and other conditions. Indeed, many of those diagnostic categories may in fact be umbrella terms for a multiplicity of rare disorders that manifest with similar symptoms.”

More information here

Duchenne Muscular Dystrophy– Finding Solutions in Ireland : Join Our Boys

Wednesday, 24 June 2015 from 09:00 to 17:00 (IST)
Dublin 3, Ireland.
Register here

May 15th 2015 is TSC Global awareness day.


On this day we will officially launch TSC Ireland and our TSC Ireland website. To mark this occasion, we would like to extend an invitation to all patients, parents, families and carers affected by Tuberous Sclerosis Complex, to a meeting in Trinity College, Dublin. We are delighted have three speakers, each of whom has considerable expertise in TSC.e

The meeting will be chaired by Dr Colin Doherty, consultant neurologist in St. James’ hospital, Dublin. Dr Doherty is already involved in research involving Tuberous Sclerosis Complex in Ireland. The title of Dr Elizabeth Thiele’s talk is “Living with Tuberous Sclerosis Complex (TSC)” The title of Dr Chris Kingswoods’s talk is “Care for today, Hope for tomorrow” The meeting will be held in The Stanley Quek Theatre, Trinity Biomedical Sciences Institute, 152-160 Pearse Street, Dublin 2, from 2pm to 4pm on Friday May 15th.
Please see attached webpage for details and biographies of the speakers.
Unfortunately we are not in a position to offer crèche or child minding facilities at this meeting, but we do hope to arrange a family day over the coming months. If you have any queries please email tscireland@outlook.com We look forward to seeing as many people as can make it.

Wednesday 20th May is International Clinical Trials Day


and to mark this day St. James’s Hospital Dublin have extended an invitation (from 10 am to 12 pm) aimed towards the public and patients. Then in the afternoon (from 1 pm to 3 pm) they will host an open house in the Clinical Research Facility. If you are able to attend this open day please confirm by email to: burdzana@tcd.ie or by phone to Anna on 01-4103900 by 10th May 20th. If you have any questions please contact do not hesitate to contact Derval: reidyde@tcd.ie

Ireland's first National Rare Disease Office (NRDO)


is expected to open officially in a number of months, the HSE has stated. Addressing the Joint Oireachtas Health Committee on rare diseases in Ireland, Helen Byrne, Assistant National Director, Acute Hospitals Division, HSE, said that the NRDO would be based in the Mater Hospital in Dublin pending the establishment of the new National Children's Hospital, and it was hoped to open the office officially towards the end of the second quarter of this year.

More information here

EURODIS Membership Meeting 2015.


Each year, the EURORDIS Membership Meeting provides over 200 patients, patient organisations, policy makers and other stakeholders with networking opportunities and capacity-building workshops to improve the lives of those living with a rare disease. .
EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 676 rare disease patient organisations in 63 countries. We are the voice of 30 million people affected by rare diseases throughout Europe

More information here

The Northern Ireland Rare Disease Partnership


IPPOSI, GRDO and others sat on a discussion panel at the Oireachtas Health Committee hearing on Rare Diseases yesterday. The full session is broken into three videos below, please note the first video takes a few minutes to begin, so hop forward to skip to the start of the public session.
Committee Chairman, Jerry Buttimer TD said: “Rare Disease Day is an annual, awareness-raising event co-ordinated by a non-governmental alliance of 614 rare disease patient organisations in 58 countries. Our meeting will enable Committee Members to get an in-depth briefing on the issue in Ireland from a range of voices on progress in implementation of the National Rare Disease Plan. We look forward to engaging with groups dealing with various rare diseases on key issues they face in terms of prevention, detection and treatment of rare diseases, access to medication and the identification of appropriate centres of expertise.”

Link to video



Community


Facebook  twitter   Flickr