The National Centre for Medical Genetics (NCMG) was established at
Our Lady’s Hospital Crumlin in 1994. The NCMG aims to provide a
comprehensive service for all patients and families in the Republic of
Ireland affected by or at risk of a genetic disorder. The Centre provides
a service for both children and adults. It is the only centre of excellence
in Ireland which provides clinical and laboratory services for our
members.
Judy Windle of GRDO said “the low profile
and public awareness of rare disorders in
Ireland means that Irish people are facing
tremendous difficulties. Scarcity of
information and expertise and a lack of
specific health policies translate into
delayed diagnosis and difficulties in
accessing care. Often people with rare
conditions cannot find a relevant support
network resulting in a feeling of
vulnerability and isolation for them and
their families”. She added “When you look
at the incentives in Europe and what is
GRDO Launches
Information Leaflet
The Genetic and Rare Disorders Organisation (GRDO)
is a non governmental organisation. GRDO acts 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.
We are extremely alarmed to hear that there are to be further reductions
in staff numbers which will inevitably lead to some vital services being
curtailed. This will mean that people with genetic conditions will not have
access to genetic tests or genetic counselling which, for some families,
will be catastrophic.
happening in the different member states of the EU, you see
almost nothing happening in Ireland. To-day we hope will
show those affected that they are not alone and that there is
someone who can help point them in the right direction.”
The Genetic and Inherited Disorders
Organisation, trading as Genetic and Rare
Disorders Organisation, is a company limited
by guarantee and is registered as a charity
and run by volunteers. The organisation
A Rare Day for Rare
Disorders
“GRDO acts as a primary source of information and support
for Irish people affected by rare disorders and an important
part of the Awareness Day is to make such people aware that
the support is available to them.” she said.
took the decision to include rare in its title
in order to reflect the groups and
individuals we represent. A rare
GRDO was joined by the Medical Charities Research Board,
by RehabCare the health and social care division of Rehab
Group and by the Irish Platform for Patients, Science and
Industry (IPPOSI). There was a large attendance at the
meeting with representation from the universities and the
medical fraternity as well as politicians and officials from the
Health Service Executive.
disorder is a disorder affecting less
than 1 in 2000 people. It is estimated
GRDO organised an information event in the Mansion House Dublin to
celebrate the first European Awareness Day on 29th February. GRDO
received a grant from the Community Foundation, which was part-funded
by the Dr. Alison Byrne Fund and enabled us to organise our meeting to
raise awareness of rare disorders in Ireland.