General Election 2016

This General Election, DEBRA Ireland are challenging their local candidates to make rare diseases like EB a priority and to become #ebaware because without awareness there is no funding, without funding there is no research, without research there is no cure and without a cure there is no hope.

There are currently up to 300 families living with this condition nationwide.  Currently there is no cure and the only treatment is constant painful bandaging of the skin. DEBRA Ireland is the only charity providing vital support and services to those living with EB.

Become part of our General Election campaign

When your local candidates come looking for your vote ask them three simple questions:

  1. Rare diseases, such as EB, are not actually rare at all there are 1/4 of a million people in Ireland today living with a rare disease.
    — What are you and your party going to do to ensure implementation of the National Plan for Rare Diseases?
  2. Families living with EB have to cope with 3 hour agonising dressing changes without any nursing support.
    — What could you or your party do to help?
  3. Dressings and bandages are not considered drugs & therefore not directly available on either the medical card or Drugs Payment Scheme.
    — Is this a fair way for society to treat some of its most vulnerable?

Download our General Election information leaflet here.

Website leaflet page 1
#GE16
Website leaflet page 2
#GE16


 

Rachel and Casey Connors

The extraordinary butterfly Casey Connors
Casey

Casey is a bright and inquisitive little three year old who was born with EB. Like all EB heroes she is also a real fighter. Her mum Rachel has also had to become a fighter. She describes the lack of awareness of EB as a huge obstacle when trying to gain access to supports.

The most recent battle Rachel is fighting is gaining access to appropriate housing for her and her two children. Due to the severity of Casey’s condition and the complex needs attached, the family require a specific type of house.

Rachel explains, “Living with EB is already tough enough on my family. Now we are faced with the real worry about how we are going to access appropriate housing.”

Unfortunately there is currently no appropriate housing available. Rachel believes that if our potential leaders become EB aware they would understand the challenges faced by families living with rare debilitating diseases and it would mean access to vital supports and entitlements.

When launching Ireland’s state programme for the 1916 Commemorations, Enda Kenny said “2016 will belong to everyone on this island and to our friends and families oversees”.

This celebration of community and inclusion needs to be extended to people living with EB. What better year than 2016 for the Government to take notice of some of society’s most vulnerable, deserving of their commitment to confine EB to the medical history books. It all starts with awareness. Casey is part of the next generation of Ireland . Don’t let her down.

What is Advocacy?

iStock_000009477058XSmallThe term advocacy means different things to different people. From DEBRA Ireland’s perspective, we use it to describe the work that we do to encourage positive change for people who live with EB.

We work to understand the issues that have (or have the potential to have) a negative impact on families who live with EB. We then take steps to highlight and explain these issues to key decision makers and to encourage positive action to bring about improvements. When the decision makers are politicians and state officials, the process is referred to as lobbying. In addition to lobbying however, we also talk to other decision makers such as senior people in the HSE and hospital management.

  • On average we attend up to 500 hours of meetings each year fighting for EB patients’ rights
  • We know the best way to educate people about EB is by using the media cleverly. Last year we had 250 articles published and aired including EB Awareness Day
  • Each year about one third of EB patients ask DEBRA for help with medical entitlements

Gathering information through the EBCare registry, will be essential to all aspects of our advocacy work. Having solid evidence is an invaluable tool in any advocacy campaign and ultimately we hope that the information gathered by the registry will also be central to persuading the government to pay for future treatments for EB.

It can be a challenge to categorise our advocacy work into neat boxes but the pages in this section give an overview of our main areas of focus. Much of our advocacy work complements our efforts in patient care, research and in building awareness.

We are always extremely keen to get input on our advocacy efforts. If you have any thoughts or questions, please get in touch with Avril Kennan in DEBRA Ireland.