GlobalSkin Newsletter

September 2024

Message from the Board President

Dear GlobalSkin Members,

I can’t believe that it is September already! With the end of the year just around the corner, I am certain that we will finish 2024 in a very exciting ways we begin putting plans in place for next year.

GlobalSkin continues to grow at a remarkable pace and has seen a 15%-member increase over the past year! Welcome to all of you and thank you for joining this global alliance that serves people living with dermatological conditions. Collectively, our 284 members represent people in 70 countries of the world covering 59 different disease areas.

Read the Full Letter

GlobalSkin at EADV 2024

GlobalSkin's Board and Staff will be attending the EADV Congress in Amsterdam this week September 25-28, 2024. The event provides a valuable opportunity for us to engage with dermatologists, researchers, funding partners, as well as our GlobalSkin Members. We are excited to share the patient perspective in our discussions and reconnect with patient organization leaders attending the event.

During the Congress, we’ll be involved in several key activities, including hosting the Skin Matters Reception and GlobalSkin-Europe Member Meeting, participating in the Patient Organization Area, co-hosting a scientific session, and discussing our 2025 plans with our partners.

Additionally, we’re proud to launch the PRIDD measure at this year’s EADV Congress (details in the next section). We look forward to a productive and inspiring time in Amsterdam.

See more details about our activities at the EADV by clicking the button below.

Find Out More

PRIDD Measure Launch

On September 25th, in Amsterdam alongside the European Academy of Dermatology and Venereology Congress, GlobalSkin is launching a major dermatology advancement that is poised to correct the current underestimation of skin diseases burden.

The new Patient-Reported Impact of Dermatological Diseases (PRIDD) is the first fully validated dermatology impact measure applicable to all skin conditions. And it is the first patient-reported outcome measure (PROM) in dermatology that was developed and validated in partnership with patients via our dedicated member organizations.

Existing dermatology measures underestimate burden and current PROMs are not appropriate for measuring burden across all skin conditions.

PRIDD was developed over the past seven years through the Global Research on the Impact of Dermatological Diseases (GRIDD) project by GlobalSkin, Cardiff University and University of Hamburg, in partnership with over 5,600 patients worldwide to address these gaps. It is because of the efforts and commitment of our patient organization members around the world that we were able to achieve this highly ambitious and unprecedented milestone.

To read the full article, including details of how to download the mobile app, click the button below.

Learn More

Elevating the Dermatology Patient Community

GlobalSkin Conference 2025

The GlobalSkin Conference will take place April 24 – 27, 2025 in Prague! We look forward to welcoming Members to our premiere event. Program development and event planning are well underway. An important objective for this conference is to give Members the chance to share and learn from each other. With this in mind, we are offering our Members the opportunity to be presenters at the 2025 Conference.

In early November, we will open a call for Member proposals for a 5-10 min presentation outline on one of three topics—Mental Health, Advocacy or Successful Collaborations. If your organization has projects, research, or programming experience in any of these areas, please consider submitting a proposal to be a presenter at the 2025 Conference.

Registration for the Conference will open in early November. We are pleased to offer travel support for one person per Member organization.

Learn More

Community & Networks Updates

GlobalSkin-Europe Member Event

On September 25th, GlobalSkin is hosting a Member event during the EADV Congress in Amsterdam focused on empowering patient organizations through collaboration and strategic engagement. This interactive session will include presentations from:

- Nicole Wicki (Patient Engagement Expert)
Presentation on fundraising for Patient Organisations via industry partners

- Joana Camilo (Creating Health @ UCP Executive Director and ADERMAP President)
How EU Funding can support patient organisations’ mission and sustainability

We look forward to welcoming our European Members and those attending the EADV Congress to this event. If you have any questions, please contact Yalchin.mammadov@globalskin.org for more details.

GlobalSkin's European Roundtable Featuring in the Journal of Investigative Dermatology

GlobalSkin is pleased to share we have been published in the Journal of Investigative Dermatology. The published article is focused on a European roundtable on under-researched skin diseases co-hosted by GlobalSkin and European Society of Dermatology Research (ESDR) earlier this year.

A video of the event can be viewed here. The journal article can be accessed by clicking the button below.

Read the Article

RareDERM Community Mission - Connect, Share, and Act.

In line with the RareDERM’s 2023 Forum outcomes, the community’s Advisory Committee comes together quarterly to review its priorities to Connect, Share an Act as well as its implementation plans.

The RareDERM Community of Practice comes together to discuss a shared interest and create plans of action. In their last meeting, conversations centered on patient registries, leading to exploratory discussions and actions that can be taken in planning the 2025 RareDERM Forum.

Thank you to all the Members who are contributing their time and wisdom to these two important leadership groups within the community.

World Atopic Eczema Day Campaign Roundup

We are immensely grateful to everyone who participated in World Atopic Eczema Day 2024 and supported the #AtopicEczemaUnfiltered campaign. Through the combined efforts of patients, advocacy groups, healthcare professionals, and industry partners, we were able to highlight the real-life experiences of those living with Atopic Eczema around the world.

This year's campaign emphasized the hidden struggles that people with Atopic Eczema face – challenges that often go unnoticed or are misunderstood. These powerful, untold stories brought greater understanding and visibility to what it means to live with this condition.

Our World Atopic Eczema Day campaign received an amazing global response, generating more than four million impressions and over 600,000 engagements. Additionally, the GlobalSkin’s 2024 World Atopic Eczema Fund supported 22 Member organization projects across 20 countries in the planning and implementation of activities raising awareness of the disease and/or building community during World Atopic Eczema Day.

GlobalSkin at ISAD 2024

A delegation of Atopic Eczema Community and GlobalSkin staff are attending the International Society Atopic Dermatitis (ISAD) annual conference in Doha, Qatar in October.

During the conference, GlobalSkin will co-host a Skin Matters reception with the Global Atopic Dermatitis Atlas and showcase our Atopic Eczema Community Members at a booth. We have also been invited to participate in a special pre-meeting concerning the priorities ISAD is pursuing with the World Health Organization.

Atopic Eczema Community Workshop

Messaging and communications are often taken for granted in advocacy and yet they are central to the success of these activities.

As a former journalist, documentary filmmaker, and strategic communications consultant (as well as a patient advocate), Neil Bertelsen is leading a two-part workshop on creating effective communication messages for the Atopic Eczema Community in September and October.

GlobalSkin Africa Network

GlobalSkin hosted its first African Members’ Regional meeting, April 18-20, 2024, in Nairobi, Kenya, bringing together 36 Members from 12 countries. The meeting aimed to strengthen the network of dermatology patient organizations across Africa by enhancing patient support, boosting advocacy efforts, and building organizational capacity.

A key outcome of the African Members' Regional Meeting was the unanimous decision to establish GlobalSkin’s first Regional Network, led by a newly elected Working Group with representatives from South Africa, Zambia, Nigeria, Ghana, Kenya, Uganda, and Ethiopia. Since April of this year, the African Regional Network Working Group has been meeting regularly to draft a three-year Workplan for the Network. An online meeting with all GlobalSkin African Members to discuss the workplan will be scheduled in Q4 of this year.

The African Regional Network pilot initiative aims to pave the way for similar opportunities in other regions, to be discussed at the GlobalSkin Conference in 2025. Check out our Flickr album and read the full article recapping the African Regional Meeting by clicking below.

Read the Article

Membership Updates

GlobalSkin Membership Growth

As an international alliance, we are committed to the principles of diversity, equity, inclusion and belonging. We are striving to ensure patient organizations from all parts of the world are seen, heard and valued.

Since January, GlobalSkin has welcomed twenty-seven new patient organizations to our organization, bringing our membership to 284 Member organizations, representing 59 disease areas and 70 countries.

Learn More

Opportunities for GlobalSkin Members

GlobalSkin Patient Expert Scholarship

In July, the GlobalSkin launched the 2025 Patient Expert Scholarship. We believe in the power of informed, educated, and empowered patient leaders. Through this initiative, we financially support the learning journeys of 15 patient leaders, from 12 countries, representing 9 distinct disease areas!

These 15 patient leaders will participate in the EUPATI Patient Expert Training Programme which is an educational experience that provides knowledge and understanding of the medicine research and clinical trial development process.

The 2024 EUPATI Cohort of 14 patient leaders has been working hard to complete their required courses and are now looking forward to attending the final phase of their studies. They will meet in Barcelona at the end of October, where they will attend four days of in person training and participate in their graduation.

Member Impact Fund - Launching Soon!

GlobalSkin supports our Member organizations in the important and impactful work that they do to help their dermatology patient communities. For the fifth year, we are pleased to offer the GlobalSkin Member Impact Fund.

This Fund financially assists Member organizations in the planning and implementation of activities which support their dermatology patient communities.

The GlobalSkin Member Impact Fund will launch on November 25, 2024, offering grants to 42 eligible patient organizations. Please watch your inbox for details and project criteria.

Youth Engagement Strategy & Youth Advisory Council Progress

On August 13, GlobalSkin hosted our second Young Patient Leaders Coffee Chat, engaging in a dynamic discussion about the opportunities young patients want to see from GlobalSkin.

The insights gained from this conversation are invaluable as we use them to draft our Youth Advisory Terms of Reference and strategic plan. We’re excited to incorporate these perspectives to better serve and empower our young patient community and support in succession planning for our network.

Please stay tuned for more news regarding our upcoming initiatives for Youth Engagement.

Championing the Patient's Voice

GlobalSkin Co-Signs CTA to Protect Outdoor Workers from UV-Related Skin Cancer

GlobalSkin is proud to share the Global Call to Action to Protect Outdoor Workers from Skin Cancer caused by Solar UV Radiation Exposure. In 2023, we co-hosted 2nd Multi-Stakeholder Summit on Occupational Skin Cancer in Berlin with European Academy of Dermatology and Venereology (EADV) and the International League of Dermatological Societies (ILDS) that paved the way for this vital initiative. Continuing this momentum, GlobalSkin board member Murray Turner represented GlobalSkin at the 3rd Multi-Stakeholder Summit on Occupational Skin Cancer in Brisbane, Australia, on September 10, 2024.

Read Full Article

GlobalSkin’s Presence at Upcoming Events

GlobalSkin staff are attending several conferences and events in October representing the patient voice, presenting on Global Research on the Impact of Dermatological Diseases (GRIDD) and sharing the dermatology perspective at key events.

The International Society for Quality of Life Research (ISOQOL) - Allison FitzGerald, Director of Operations and Dr. Neuza da Silva Burger, GRIDD researcher from the University of Hamburg Medical Centre will be presenting a poster on the impact of skin disease from the data collected by the GRIDD study.
International Consortium for Health Outcomes Measurement (ICHOM) – GlobalSkin is showcasing two posters on the development and psychometrics of Patient-Reported Impact of Dermatological Diseases (PRIDD). Allison will also be participating in a panel on New Horizons in Outcome Measurements representing the Patient organization role inPatient-Reported Outcome Measures (PROM) development and usage.
World Congress of Dermatology Scientific Program Committee – GlobalSkin CEO Jennifer Austin will attend the next in person planning meeting in London for the 2027 WCD.
Non-communicable Disease (NCD) Alliance Forum – Jennifer will travel to Kigali Rwanda to attend the Forum where she will emphasis skin conditions as non-communicable diseases and the impact that they have on patient’s lives. This event is leading into the 2025 High-level meeting at the United Nations on Non-Communicable Diseases.

Uniting to Change Perceptions

WHA Resolution

GlobalSkin. along with the ILDS and other key organizations, continues to actively call for a World Health Assembly resolution on all skin diseases. Through strategic outreach in Geneva and regionally we have had positive conversations with many Member States since our side-event held during the World Health Assembly in May. There is a concerted effort being made to formally reach out to Member States in all regions of the WHO across high-, middle- and low-income countries. People living with skin conditions, regardless of their economic status, deserve access to care, timely and affordable treatment options and a holistic approach to their health care journey.

It is our hope that a Member State will submit formal documentation this month for consideration of the WHO Secretariat for an agenda item to be accepted for the next Executive Board meeting on this incredibly important topic.

We will continue keeping our Members, and the wider dermatology community informed of developments and will call upon the community to join the advocacy efforts at the country level soon! If you are interested in learning more about this initiative read the backgrounder documents here.

World Skin Health Coalition

The World Skin Health Coalition (WSHC) continues to support efforts in seeking a World Health Assembly resolution on all skin diseases. Through efforts of many Coalition partners, leveraging the social media followers and signatories to the Open Letter to Policy Makers achieved during its awareness campaign earlier this year, the Coalition strives for action on and awareness about the burden of skin diseases.

Coalition Partners met in September to discuss and contribute to initiatives and activities for the coming year as 2025 planning is already underway. These will focus on the need to elevate skin health on the global health policy agenda.

If you are a multi-country organization and are interested in learning more about becoming a Partner in the World Skin Health Coalition, please visit https://skinhealthcoalition.org/ or contact Catriona.Grant@globalskin.org

Events and Awareness Days

GlobalSkin Events

GS-Europe event at EADV Congress (Amsterdam) - September 25, 2024
Skin Matters Reception at the EADV Congress (Amsterdam) – September 25, 2024
Skin Matters Reception, co-hosted with GADA at ISAD (Doha, Qatar) - October 2024 (Date to be Announced)
GlobalSkin Conference 2025 (Prague) - April 24 - 27, 2025

Other Events

EADV Congress (Amsterdam) - September 25-28, 2024
NCD Alliance Forum (Kigali) – October 14-16, 2024
14th Georg Rajka Symposium on Atopic Dermatitis (Doha) - October 24-26, 2024
12th Annual PEDRA Conference (Phoenix, AZ) – October 24-26, 2024
2024 IPPF Patient Education Conference (Newport Beach, CA) -
October 26-27, 2024
4th VIPOC Vitiligo Conference (Cairo, Egypt) - December 13 - 15, 2024

Awareness Days

Alopecia Awareness Month - September 2024
Global CMN Awareness Day - September 28, 2024
Eczema Awareness Month (US) - October 2024
Global Week for Action on NCDs - October 15 - 22, 2024
Word Psoriasis Day - October 29, 2024
Hyperhidrosis Awareness Month – November 2024
World Psychodermatology Day - November 18, 2024
European Antibiotic Awareness Day – November 18, 2024
World Antimicrobial Resistance (AMR) Awareness Week - November 18-24, 2024
Universal Health Coverage Day - December 12, 2024

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:

GlobalSkin.org

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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 284 patient association members ─ located in 70 countries representing 59 disease areas ─ to reach more patients, and provide them with greater support, education, and advocacy.