In anticipation of Rare Disease Day, GlobalSkin ran the #MySkinIsRare campaign from February 1 to 29, aiming to increase awareness about Rare Diseases of the skin and encourage patients to share their personal experiences. Campaign resources, including social media cards and online banners, were accessible on GlobalSkin.org/MySkinIsRare to support patient organizations in promoting the campaign within their networks

The campaign garnered significant attention, with over 2.7 million impressions, 242,000 video views, and 71,771 engagement instances. Thank you to everyone for taking part in this year's #MySkinIsRare campaign and making it a great success!

GlobalSkin is proud to have supported 15 Members representing 12 countries with its new Rare Disease Day Fund. With this support, Members created amazing projects including hosting workshops, radio presentations, developing pamphlets and running social media campaigns. These initiatives not only raised awareness but also fostered a sense of community and solidarity among those affected by rare diseases. 

A detailed summary of Members’ projects benefiting from the Rare Disease Day Fund will be available soon, highlighting the impactful ways in which they contributed to promoting understanding and support for rare diseases globally.

With the upcoming election in June, there are many opportunities to influence health policy within the EU. GlobalSkin-Europe will be meeting online in May to debate the issues and discuss the possibilities. In the meantime, the European Patients’ Forum has provided resources for patient organizations to utilize during the elections campaign, which can be accessed via this link: EU Elections 2024 Campaign – Vote4Patients.

These resources include:
- A comprehensive Communications Toolkit
- Advocacy Toolkit
- EPF Manifesto & the link to endorse it online

GlobalSkin was present at the European Dermatology Forum, in Montreux, Switzerland from January 25 to 27, 2024. Yalchin Mammadov, GlobalSkin's Senior Advisor for Europe, delivered a compelling presentation titled, "Patient Associations: Collaborating for Dermatology Patients.”, where he emphasized the role patient associations play in bridging the gap between medical professionals and patients. He discussed how these associations not only offer support and information to patients but also contribute to the broader dermatological community by advocating for patient needs, promoting awareness, and participating in research and policy-making.

For the second consecutive year, GlobalSkin has received an invitation from the International League of Dermatological Societies (ILDS) to take part in their official meetings with the World Health Organization (WHO). GlobalSkin CEO Jennifer Austin, along with our Public Affairs Director Visnja Zaborski Breton, will be present at the meetings taking place March 25 - 26, 2024 in Geneva, Switzerland.

We look forward to bringing the patient perspective to the important discussions with WHO departments including Neglected Tropical Diseases, Non-communicable Diseases, Ageing, Occupational Health, and Essential Medicines.

While in Geneva in March with the ILDS, we have organized a briefing session on the proposed World Health Assembly (WHA) resolution on skin diseases for the permanent missions of Member States. Invitations have been extended to Member States to increase the number of supporting countries of the resolution. Thank you to the Geneva Health Forum for their support of this initiative.

We continue to work in close coordination with the ILDS the International Foundation on Dermatology, Network for Skin Neglected Tropical Diseases Network (NNN), and Anesvad, to pursue an all-skin diseases resolution for consideration at the next World Health Assembly (WHA) in 2025.

Thank you to everyone who participated in and supported the GRIDD Study, a ground-breaking patient-led research initiative, launched in collaboration with Cardiff University (UK) and University Medical Centre Hamburg-Eppendorf (Germany). The Study officially reached its conclusion on December 31, 2023.

We had participation from 4,118 individuals spanning 96 countries and 102 skin disease areas. We’ve put together a wrap-up report on the GRIDD Study, detailing the milestones accomplished and the very promising future that lies ahead as we endeavor to translate the Study’s insightful findings into meaningful actions that can help make a tangible difference for dermatology patients around the world.

We are thrilled to share that the Journal of the European Academy of Dermatology and Venereology (JEADV) has recently published a significant article discussing the Global Research on the Impact of Dermatological Diseases (GRIDD) project, which is co-led by GlobalSkin, the University of Hamburg, and Cardiff University.

The article primarily focuses on the Delphi study, a crucial step in developing the draft version of the new Patient-Reported Impact of Dermatological Diseases (PRIDD) measure. To read the article, click the button below or click here to read all of our GRIDD publications. In the near future, we are anticipating the release of additional publications that will further expand upon the findings of the GRIDD project. 

GlobalSkin.org

Unsubscribe