In September we joined over 40 other DEBRA organisations from around the world at the DEBRA International Congress in Paris. Our small team played a big role at the Congress, presenting on developments in research, EB clinical practice guidelines, our plans for EB Awareness Day and the future of DEBRA International communications and marketing. Most importantly however, we got to learn, share and plan together, with our colleagues from across the world. Our friend Mike Jaega, DEBRA UK Trustee, described the experience far better than we could. Read his inspirational words here.
‘After spending the last four days in Paris at the DEBRA International Congress. It’s amazing, heartwarming and so, so encouraging to meet people from all over the world, from Ireland to Austria, Cuba to America, who are so determined, clever, relentless in this struggle to beat EB and improve care for people living with the condition now! Email, Facebook etc are great but there’s nothing like meeting people face to face, knowing that you all have the same goal. People who are so driven, caring, determined and dedicate their life to those in need! I’m convinced that together we will win this battle! All you fundraisers, trustees, organisations, clinicians, nurses, parents, carers, kids & adults with EB are all playing, and will continue to play, a part in us moving forward! Clinical trials are happening, care is improving, positive awareness is helping, empowerment and not living the life of a victim is pushing people with EB to accomplish anything they want! We need to keep it going, but please, please, whatever you do, events, talks, even reaching out to people who need it or simply passing information on has a massive part to play, so don’t under estimate that! Let’s keep this going!‘