We campaign to change policies that affect people’s lives so no one has to fight alone.
We want to make sure that the voices of people impacted by EB are heard by decision makers and will unite to make sure services for everyone with EB are prioritised at the highest level.
We will unite to make sure services for everyone with EB are prioritised at the highest level.
On the eve of #RareDiseaseDay2024, Debra’s Head of Advocacy, Research and Policy, Sinead Hickey, along with Deirdre Callis, Head of Family Support Services, and Dr Rosemarie Watson, Debra Board member and former Director of EB Services in Ireland, presented the need for access to health services for people impacted by EB to the Oireachtas Committee on Health.
Each year, we prepare a pre-budget submission for the Government that highlights the investment that is needed to improve services and supports for people living with or caring for someone with EB.
One of our current priorities is to make sure that adults with EB can get care from a specialist consultant if they need it. We are advocating for an EB Clinical Lead to be appointed to St James’s Hospital and have been in regular contact with the hospital team and with senior members of the HSE. We will continue this direct advocacy until this vital role is in place.
Each year we support Rare Disease Day on 28th February to raise awareness for the 300,000 people in Ireland living with a rare disease. It can be exhausting for people with a rare disease, such as EB, to constantly have to explain their condition to others. We want to increase knowledge of EB, especially amongst medical professionals and researchers, so if they meet someone with EB, they’ll have a better understanding of the condition.
As well as campaigning, we speak directly to those in the health system, to ensure people impacted by EB get the services and supports they need. This includes engaging with local community health teams, the teams in the hospitals and with HSE representatives at the highest levels.
This is an exciting time, with the first ever EB treatments looking for approval from regulators – but it tends to take a long time before new medicines reach patients in Ireland. This year, we will be preparing to tackle these challenges by engaging with all relevant stakeholders in the drugs reimbursement process. More information to come soon.
Led by Rare Disease Ireland, we support the Get Rare Aware campaign. Ireland has only 1/2 the staff it needs for genetic services. People are waiting over 2 years for the right diagnosis. The delay in diagnosis means that people are being treated for the wrong diseases. Please take this opportunity to contact the Oireachtas members that represent people in your area and ask them to Get Rare Aware.
