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.
;)
For the second year in a row, we are asking the Government to prioritise EB care.
By investing €810,000 in mental health support, outreach care, and home care for people living with EB, we can make an immediate, positive impact for the approximately 300 people living with EB in Ireland. This is less than 2 cups of coffee per person per day. Based on the average of people living with EB in Ireland (300), the investment we are seeking would cost €7.40 per person a day, less than the price of two cups of coffee.
We are asking the Minister for Health to meet with us to learn how this small ask can have a big impact.
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.
EB Awareness Week is an important opportunity to draw attention to the fight that people living with EB experience every single day. It’s a fight for essential treatment, care and support. A fight for the services that would change people’s lives.
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.
