Dear Members and Stakeholders,
With the arrival of autumn, GlobalSkin reaches another milestone by celebrating its third anniversary! Congratulations to our Members, Board of Directors, CEO and staff, who have all contributed to our success to date. Our membership now stands at 93 patient organizations from 36 countries, representing over 37 skin conditions. We continue to invite Patient Organizations to join our movement – Membership is free! Spread the word amongst your networks and encourage fellow patient organizations to get involved with building our GlobalSkin movement.
On October 1, 2018, GlobalSkin held its Annual General Meeting where we updated Members on accomplishments over the past year and provided an overview of our activities in 2018 and beyond. Members can watch the recorded event here (Note: You must be logged in to access this link). We also held elections for two Board of Director positions and I am pleased to welcome: Julius Muungano from Promotion of Education Link Organization (PELO) representing albinism and skin cancer in Tanzania and Simmie Smith from the Canadian Psoriasis Network. We look forward to working with them both! Learn more about our Board of Directors here.
IADPO Board and staff members recently returned from a very successful week at the EADV (European Academy of Dermatology and Venereology) Congress in Paris in September where we hosted a joint scientific session with the EADV titled Supporting Your Patients Beyond Skin: the psychosocial impacts of dermatological diseases; participated as an exhibitor and coordinator of IADPO members at the Patient Village; held productive meetings with stakeholders; and hosted another successful Skin Matters Reception.
Friday, September 14th was the first World Atopic Eczema Day. On this date, GlobalSkin launched AltogetherEczema – a growing community for global eczema and atopic dermatitis patients, caregivers and organizations, aiming to identify critical issues, share knowledge and deliver change. I encourage everyone to visit the AltogetherEczema.org platform and read the very inspiring and moving stories shared both by those suffering from eczema and atopic dermatitis and, the people who support them. We thank Sanofi Genzyme Regeneron for their joint unrestricted educational grant, which made this project possible.
GlobalSkin also hosted a European Patient Organizations Community meeting on September 15, 2018, in Paris bringing together patient leaders from across Europe to discuss challenges and opportunities currently faced in this region. As 40% of IADPO Members are located in Europe, the objective was to have an open discussion on where opportunities exist to improve advocacy for skin patients in Europe. We invite all European patient organizations to connect with IADPO as we continue to support our European Member Organizations.
Another significant initiative we are currently working on is the GlobalSkin 2019 Conference being held in Milan, Italy from June 7-9th, 2019. Please mark your calendars! At this conference, we are looking forward to bringing together patient leaders to inspire and offer opportunities to learn and share. Registration and a call for speakers will be open later this year. Our goal is to financially support the attendance of one representative per member organization.
Important steps continue to be undertaken in our research project, GRIDD (Global Research of Impact of Dermatological Diseases), the first completely patient-initiated and patient-driven global research study in dermatology. This project will support local, regional and international efforts to create awareness, better advocacy on skin diseases and encourage decision-makers and stakeholders to consider dermatological diseases more seriously.
We look forward to the future opportunities to connect with you!
Sincerely,
Jean-Marie Meurant
Board President – IADPO