Updated: Jul 31
The theme of the International Alliance of Dermatological Patient Organisations, Globalskin, conference (June 1—4) aptly captured the spirit and objectives of the patient communities that participated. The three-day event focused both on rare dermatological conditions as well as on the relatively more common ones.
It also proved to be a wonderful opportunity for various DEBRA/EB delegates from France, Canada, Croatia, Belgium, South Africa, Singapore and the US to connect, strategise, and discuss priorities for their communities.
The DEBRA International president and board member of Globalskin, Dr Ritu Jain, spoke about therapeutics that give hope to people living with EB as well as of the challenges of accessibility and affordability that need to be overcome. Delegates attended plenaries and practical workshops on using patient data to strengthen advocacy initiatives, patient experience to impact regulatory organisations, involvement in research, working with industry partners, and much more!
An exciting highlight of the event was the launch of the Global Research on the Impact of Dermatological Diseases (GRIDD) study that aims to collect data that can be used to better advocate for better care and treatment. DEBRA International looks forward to being part of the study and to employing the data for enhanced outcomes.
"The Global Skin Alliance Conference in Brussels helped expand and push forward the vision of running a rare disease organization through the space of research, advocacy, and the role of patient data to effect change for Debra nationally and internationally. The conference sessions and work groups gave further structure and knowledge in how to navigate the rare disease space to find parallel objectives of other skin groups and work together. The conference included many national Debra groups, in a post-COVID era where nearly no opportunities to be in one place have existed for a number of years it was great to build new connections globally." - Ryan Hultman, DEBRA International & DEBRA Canada
"DEBRA South Africa attended the GlobalSkin Conference called Elevate in June, in Brussels, Belgium. GlobalSkin is an umbrella organisation that seeks to support patient-led NPO's. We have attended their conferences for a few years and always come home with new strategies, strength and hope to serve our community. There were many other DEBRA groups present from around the world!" - Cady Roberts, DEBRA South Africa