RAiN CRAG
As part of RAiN, we want children and young people with rare diseases to guide our research so it is relevant to their needs. Through our Children’s Research Advisory Group (or CRAG for short!) we talk to children and young people with rare diseases and get their advice on what we do and how we do it.
Are you a child or young person aged 6-17 who is living with a rare disease, or have a sibling with a rare disease? Are you interested in our research, feel enthusiastic about getting involved, and available and willing to commit to a series of online meetings? If so, join our RAiN CRAG by contacting the RAiN Network Coordinator, Melissa Kinch, below!
Visit to Queen’s University Belfast Highlights Cutting-Edge Research in Rare and Genetic Diseases
The All-Ireland Rare Disease Interdisciplinary Research Network (RAIN) Children and Young People’s Advisory Group (CRAG) was delighted to visit the Centre for Public Health at Queen’s University Belfast.
This exciting visit offered a unique opportunity for CRAG members to engage directly with leading experts in rare and genetic diseases, gaining invaluable insights into the latest advances in research and innovation within the field.
We also had the opportunity to hear from several PhD and medical students, each presenting impactful research projects focused on rare diseases. It was an inspiring day that highlighted the power of interdisciplinary collaboration and the importance of translational research in rare disease and prenatal genetics.
Our CRAG members wish you a peaceful Festive Season!
As we wrap up for 2024 and reflect on everything that we have achieved since the start of the year, our CRAG group are wishing you a peaceful festive season and a Happy New Year! Check out these gorgeous festive messages!
RAiN CRAG Member crowned Leinster Young Carer of the Year 2024!
At RAiN, we are so proud to announce that CRAG member Shannon Egan has been awarded Leinster Young Carer of the Year 2024 in recognition of all of the compassionate care and support that she provides to her sister Alanna who lives with Koolen de Vries Syndrome. Shannon has been a valued CRAG member since the beginning, and has worked hard to advocate for Rare Diseases. This award is a true testament to her commitment to Rare Diseases and we couldn’t be prouder!
Rare Ireland Conference 18th October 2024
On Friday 18th October 2024, some of the members from our CRAG presented at the Rare Ireland Conference at the Shamrock Lodge Hotel, Athlone. During the conference, they shared their work to date. Our members have really grown in to emerging leaders and advocates for Rare Diseases over the past year! They are currently finalising a video to educate young people about Rare Diseases that will be shared nationally early next year! They are also collaborating with young people from international youth advisory groups via TeddyKids on something special for Rare Disease day! Keep your eyes peeled!
First In-Person RAiN CRAG Meetup!
The RAiN CRAG hosted their very first face-to-face event on the 16th of February between 10a.m.-1p.m. at the Office of the Ombudsman. It was a day of fun, collaboration and friendship!
You can read more about the day by clicking the link to the press release, or hear directly from one of the CRAG members about having her voice heard on Rare Disease Day!
