Our Advocacy Work
Rare Ireland are dedicated to working on behalf of the rare community, highlighting the needs of the families affected by rare conditions and identifying areas where we can influence change to improve services.
We are active members and work in partnership with Rare Diseases Ireland, Eurordis and IPPOSI.
We also take part in different policy forums, including the Rare Disease Strategy, National Genetics & Genomics Steering Group, and a number of other programmes.
We actively support the RAIN (Rare Disease All Ireland Interdisciplinary Research Network).
Campaigns
I am Number 17
I am number 17 is a public awareness campaign to raise the profile of Rare Diseases in Ireland. It was initiated and funded by Takeda in partnership with Rare Diseases Ireland and Rare Ireland.
The campaign features 17 Changemakers who highlight their individual conditions and tell their personal stories. The campaign hopes to demonstrate to the general public that ‘rare is not that rare’, 1:17 individuals are affected by a rare disease in Ireland today. Many of the changemakers are members of Rare Ireland. This is a multi phase campaign expected to run over a 3 year period.
Get Rare Aware
Is an awareness campaign targeting our elected representatives, to highlight the needs of the rare community. This campaign is a collaboration between Roche Pharmaceuticals and Rare Diseases Ireland (RDI).
Rare disease diagnosis must be improved, including timely access to genetic services and the manner in which diagnoses are delivered and genetic services urgently need adequate resources.
A lack of awareness about rare diseases, particularly among GPs and emergency doctors, can lead to delayed diagnoses and treatments; education and appropriate referral pathways are needed for all healthcare professionals.
People living with a rare disease often experience fragmented care, and they or their guardians report needing to link up services and specialties themselves, adding to stress levels.
The lived experience is a valuable resource that should be captured to feed into improved care for all with the same and similar diseases. There is a strong appetite for involvement in research among those living with a rare disease.
LightUpForRare
In an effort of global solidarity, Rare Ireland asks, councils, universities, landmarks and various historical sites across Ireland, to light up in support of those living with rare diseases. Year on Year we have increased the involvement across the country in the light up campaign. The general public can participate by lighting up at home or attending one of the listed locations that will be lit up at the arranged time. If you have any questions, please WhatsApp on +353 89 4220 228 to find a location nearest to you.
European Advocacy Training Week In Brussels
In February 2023 our Co-Founder, Laura, and our previous Advocacy Officer, Lyndsey travelled to the European Parliament in Brussels to join other European Rare Disease Advocates on an advocacy training programme organised by Eurordis.
They had an opportunity to meet with Irish Members of European Parliament to share their lived experiences of living with rare diseases in Ireland. The issues raised were the need for interventions for children, adequate psychological support for
families, the importance of extending the number of conditions tested for in the Newborn Screening Programme in Ireland, and other unmet needs of the Irish rare disease community.
They had a very positive trip and thoroughly enjoyed networking with European elected representative and sharing experiences with the other advocates and rare disease patients.
