At Rare Disease Ireland (RDI) we are establishing the IPAG for Rare Diseases to mirror the European Reference networks (ERNs). We are inviting you to join our IPAG as we want to learn from your experiences of collaboration with ERNs.
We aim to bring transparency and a high level of participation, engagement, involvement, and agreement with a collective focus on the lived experience of people living with Rare Diseases to inform healthcare service development and the future research and education environments for Rare Diseases in Ireland.
Please RSVP to research@rdi.ie we hope you can make it and will be able to contribute to this important initiative to imbed ERNs into the Irish healthcare system and bring all of the benefits of ern membership to people living with rare diseases in Ireland.
The National Paediatric Craniofacial Centre Patient Advocacy Group was developed in 2018.
This group is open to all parents and patients over 16 years of age, please see contact details below to join.
David Jones has been Chairman of the NPCC PAG since its commencement in 2018.
The goals and purpose of the PAG will be determined by the group. Items that may be at the forefront may be service improvements. The PAG may have further ideas for resources or services they are committed to promoting and advancing. These efforts will of course become even more important as we look to the design and deliver craniofacial services under the banner of the Children’s Health Ireland (CHI).
CHI is our new single legal entity since 1 January 2019 and which brings together Temple Street, Our Lady’s Children’s Hospital Crumlin and National Children’s Hospital in Tallaght and the Children’s Hospital Group (CHG). CHI has a significant focus on clinical and cultural integration as we prepare for our move to the new children’s hospital in 2026. The NPCC PAG may decide to advocate for a key role in the design of craniofacial related services during this integration process.
The Craniofacial team will engage with the PAG in a more formal setting every quarter to share key updates and solicit input on their annual priorities, opportunities, feedback , and resource needs , to ensure alignment and support moving forward.
If you would like to join this group or if you have any queries, please contact David via what’s app, 0863236389 and he will add you to the PAG what’s app group.
