News from GlobalSkin
News from GlobalSkin
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June 2023
Message from the Board President

Dear GlobalSkin Members, 

I am truly inspired and energized after attending the recent GlobalSkin Conference ELEVATE 2023, at the Crowne Plaza in Brussels, Belgium. We welcomed 200 participants including 142 patient leaders from 124 organizations spanning across 53 countries, as well as speakers, sponsors, and stakeholders. The four-day conference focused on what it means to Elevate ourselves as patient leaders, each other, and the communities we all serve. Most importantly, the conference illustrated the need for better treatment and care for persons living with skin diseases/conditions.

Read full letter 
 

GlobalSkin will be attending the 25th World Congress of Dermatology (WCD), taking place July 3-8, 2023, in Singapore. Jennifer Austin and Marc Yale will attend the event with a small delegation of Board Directors and staff.

Learn about the sessions GlobalSkin is chairing, our Skin Matters reception, Marc Yale's keynote presentation and more.  We look forward to seeing you there and collectively bringing the patient voice to this important dermatology event. 
 
Read more here
 

After several years of not seeing one another, we were thrilled to host our GlobalSkin Member Conference “ELEVATE 2023”, from June 1-4, in Brussels. This event brought together 200 delegates from around the world. Over 140 patient leaders representing 124 different Member organizations from 53 countries attended. They were joined by 25 speakers that included experts in the field of medical dermatology, research, and advocacy among other areas. This global event strengthened our member connections across regions and disease areas.

Don't miss our in-depth recap of the event including highlights, testimonials and where you can find the event photos. Members, you can also access slides and presentations. We express our deepest gratitude to all the participants, speakers, exhibitors, and event sponsors for their vital contribution in making Elevate 2023 a resounding success.
 
Read event recap here
 
GRIDD - Global Research on the Impact of Dermatological Diseases

On June 5, 2023, GlobalSkin, in collaboration with Cardiff University (UK) and University Medical Centre Hamburg-Eppendorf (Germany), launched the Global Research on the Impact of Dermatological Diseases (GRIDD) Study. The GRIDD Study is a ground-breaking initiative aimed at generating comprehensive global data about the real impact of conditions of the skin, hair, nails, and mucosa. At the heart of this study is the first use of the new Patient-Reported Impact of Dermatological Diseases (PRIDD) measure, a tool developed with nearly 2500 dermatology patients to capture and quantify unique patient perspectives. Launched with the aim of engaging 10,000 participants, the GRIDD Study takes 10-20 minutes to complete and is accessible in the following 17 languages. 
 
Thanks to our Member community, the patient response to the study in the first three weeks has been extremely encouraging. As of June 25, 2023, the survey has been taken by 861 individuals from 46 countries and 62 different disease areas. Lichen Sclerosis leads as the condition with the most responses (23%), followed by Psoriasis (13%) and Hidradenitis Suppurativa (11%).
 
GlobalSkin Members and stakeholders in dermatology including health care professionals can play a vital role in the success of the GRIDD Study by encouraging patient participation. The data collected will help to validate the need for improved care, better treatment options, and more affordable medicine for dermatology patients globally. The GRIDD Study is open until September 28, 2023.  
 
If you are a dermatology patient – you are invited to take the GRIDD Survey now and share it with anyone who can take part!  
 
 
Learn more about the GRIDD Study here
 
GlobalSkin Championing for Dermatology Patients

GlobalSkin has achieved several milestones in our global advocacy efforts in 2023 by participating in key events at the World Health Organization in Geneva and the United Nations in New York.

We are taking important steps and building valuable relationships along the way. Learn about some of our recent successes!
Read more here
 
GlobalSkin Board Election 2023

GlobalSkin recently ran an election for new Board Directors and we announced the winners in Belgium at Elevate 2023. Many thanks again to the 10 candidates that were in the running, and congratulations to the four elected Board of Directors:  
 
David McMahon - Irish Skin Foundation (re-elected) 
Tina Mesarič - Institute Atopika 
Maya Tulpule - Shweta Association 
Murray Turner - Psoriasis Australia
 
Learn more about the Board here
 
GlobalSkin Communities
Recap of Atopic Eczema Forum

GlobalSkin hosted our third Atopic Eczema Forum on June 1 in Brussels, preceding the ELEVATE 2023 Conference. The forum gathered 28 Members from 20 countries for a day of learning and connection. Members gained insight about their colleagues’ success stories, learned about possibilities of better measurement of disease for patients with atopic eczema and workshopped on Shared-Decision Making between doctors & patients with the support of patient organizations.

Read more here.
Leveraging Our Resources: Atopic Eczema Documentary

Register for this upcoming webinar (Wednesday, July 12 9:30-10:30 ET) to learn about GlobalSkin’s upcoming #ShareTheBurden campaign and for tips on leveraging the documentary, Skin: Our Barrier to this World, to enhance your organization’s advocacy efforts.

Check your email for details. 
World Atopic Eczema Day 2023

This year’s World Atopic Eczema Day campaign theme is "If You Only Knew," focuses on the hidden social and psychological impacts of atopic eczema on youth. GlobalSkin and the European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) have created a campaign toolkit that can help you engage with the public. GlobalSkin also has produced a powerful 10 minute documentary with patients from six regions who shared their experiences living with atopic eczema.

Learn more here.
ISAD – GlobalSkin at ISAD

GlobalSkin will be representing the Atopic Eczema Community while attending the 13th George Rajka Symposium hosted by ISAD between August 31-September 2, 2023, in Poland.

GlobalSkin has been invited to attend a workshop with WHO delegates discussing access to care and to moderate the “Worldwide Solidarity in the Care of Patients” session. We look forward to seeing you in Poland.

Learn more here.
 
EADV Congress 2023

The 32nd EADV Congress in Berlin taking place from 11-14 October 2023 and the EADV are organising a ‘Patient Organisation Area’ where you will have the opportunity to present your important work during a dedicated time slot, onsite in Berlin and virtually on our Congress Digital Platform. Register by the June 30, 2023.
Register here
European Patients’ Forum

European Patients’ Forum organised a webinar on ‘The revised EU pharmaceutical legislation from a patient’s perspective’.  You can watch the recording of the webinar here. 
 
The European Patients’ Forum is organising a webinar on medicine shortages, on the 30th of June 2023, at 3pm CET.  For more details and to register, please visit the link below.
Register here
RareDERM Forum Recap

On June 1st, the RareDERM Forum took place in Brussels with participation from 40 members representing 26 countries. Participants engaged with three experts on the opportunities and challenges in RareDERM from a policy, research and industry perspective and had strategic conversations in a World Café. 
Read more here

RDiRC’s Therapies Scientific Committee 

As a member of IRDiRC, GlobalSkin is passing this opportunity along to join IRDiRC’s Therapies Scientific Committee.  They are looking for three new members (could be Industry, Regulatory, Research, Health Technology Appraisal/Payer, Clinical care or Patient group) from Africa, Asia, Australasia or North & South America to work towards the therapeutic support of patients. This is an exceptional opportunity to contribute to the global rare disease community and advance rare disease therapeutic development and policy. The deadline for applications is June 30th, so don't miss out on this opportunity! 

ℹ️ For further details and to apply, please visit this link.
 

The World Skin Health Coalition is a patient-led multi-stakeholder group which was established to harness the dermatology community’s collective power to raise awareness about the global impact of dermatological diseases/conditions and increase their health policy prioritisation. (The group was initially known as the Global Dermatology Coalition but changed its name earlier this year to be more inclusive of all the constituent groups.) 

The Coalition now has 23 partners across three constituent groups: patient organizations, healthcare professional societies and industry – all equally and democratically working towards the goal of changing perceptions about the often-severe impacts of these diseases and elevate their prioritization in health policy – both at global and national levels. 

In early 2024, the Coalition will be launching a worldwide campaign to increase global awareness about the challenges experienced by millions of people around the world are facing every day because of their skin diseases and conditions.

Learn more about the Coalition here.
 
Events and Awareness Days

Webinars

  • Leveraging Our Resources: Atopic Eczema Documentary - Wednesday, July 12 9:30-10:30 ET (Watch your inbox for details.)

Events

Awareness Days


Check our website regularly for event listings. Does your organization have an “awareness day campaign”?  Please share details with us, as we would love to promote your work and share with our network. 
 
Thank you to our Core Mission partners whose collaboration and generosity is essential to our organization’s success:

The International Alliance of Dermatology Patient Organizations (also known as GlobalSkin) is a unique global alliance, committed to improving the lives of skin patients worldwide. We nurture relationships with members, partners and all involved in healthcare ─ building dialogue with decision-makers around the globe to promote patient-centered healthcare. GlobalSkin works to empower its more than 235 patient association members ─ located in 67 countries representing more than 57 disease areas ─ to reach more patients, and provide them with greater support, education, and advocacy.

GlobalSkin.org

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