GlobalSkin Newsletter

June 2024

Message from the Board President

Dear GlobalSkin Members,

I am inspired and energized after attending the World Health Assembly (WHA) side event "Skin Diseases as a Global Public Health Priority - NO UHC without Skin Health," hosted by GlobalSkin and the International League of Dermatological Societies (ILDS) last month in Geneva. The event aimed to build awareness about the burden, impact, and cost of skin diseases on both individuals and public health systems, with the goal of advocating for greater prioritization of skin diseases on the global policy agenda.

Read the Full Letter

GlobalSkin's Annual General Meeting (AGM) 2024

Thank you to all GlobalSkin Members who attended the Annual General Meeting on June 19 where we reported on how we are delivering on the objectives of our five-year strategic plan. We are very proud of the work that has been accomplished in 2023 and so far in 2024. GlobalSkin continues to grow our membership and our collaboration network, support the excellent work of our patient organizations and make important steps in global advocacy on behalf of all skin patients. We are grateful to our Members for their valuable contributions and input into our planned initiatives for the remainder of the year. For those who were not able to attend please log into our Members Only portal to access the recording.

Board Election Results

Thank you to the nine candidates in GlobalSkin’s Board of Directors Election. We are proud to have had so much interest in helping to guide our organization’s governance. Thank you to all full members who took the time to vote in our annual election.

We are pleased to announce that Guillermo Gutierrez, Fundapso Colombia, and Ritu Jain, Debra Singapore, were re-elected, and we welcome newcomer Toni Roberts, DEBRA South Africa, as a new Board Director. Congratulations to all! They will be joining our current Board Directors Michelle Capon, David McMahon, Tina Meseric, Tran Hong Truong, Maya Tulpule, Murray Turner and Marc Yale in the 2024-2025 Board. We take this opportunity to thank Gaylord Inena Wa Inena for his commitment and service during his tenure as Board Director and Board Secretary.

Elevating the Dermatology Patient Community

GlobalSkin Conference 2025

GlobalSkin is thrilled to announce that we have finalized details for our flagship Member event, the GlobalSkin Conference 2025. This biennial event will be held April 24-27, 2025, at the Vienna House by Wyndham Diplomat in Prague, Czech Republic. Our goal is to inspire, connect, and celebrate you – our Community of Champions.

Registration for the GlobalSkin Conference 2025 will open in November. Mark your calendars and be sure to secure your spot early, as spaces are limited and we anticipate a high level of interest from our members worldwide.

Additionally, for this next conference we will be seeking topic submissions for presentation by our Members. Information about this process will be provided soon and will include guidelines about submissions, important deadlines, and the criteria for selection. Stay tuned for more details!

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 the beginning of the year, GlobalSkin has welcomed sixteen patient organizations from three new countries (Costa Rica, South Korea and Togo), bringing our membership to 272 Member organizations, representing 59 disease areas and 70 countries.

We would like to extend a special welcome to our new Members:

Pemphigus und Pemphigoid Selbsthilfegruppe e.V. (Germany)
Rare Disease Ghana Initiative (Ghana)
Amore en la Piel (Costa Rica)
SADA (Severe Atopic Dermatitis Association) Korea (South Korea)
Massé World (USA)
International Association of Hidradenitis Suppurativa Network (USA)
Standing Voice (Malawi)
Hidradenitis Suppurativa Australia (Australia)
The UK Mastocytosis Support Group (UK)
Fundación Mexicana de Vitiligo y Enfermedades de la Piel (Mexico)
Albína (Czech Republic)
Africa Save Life International (ASLI) (Uganda)
Rare Disorders Kenya (Kenya)
Psoriasis Association of Ghana (Ghana)
Ectodermal Dysplasias International Network (International)
Association Santé Meilleure Vie Meilleure SM-VM (Togo)

To help us maintain this membership growth momentum throughout 2024, please connect us with patient organizations or dermatologists working with patient organizations in your disease or country who might be interested in becoming members. Please contact nicole.sudiacal@globalskin.org with any suggestions or leads you may have.

GlobalSkin African Members' Regional Meeting

GlobalSkin proudly 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. Representatives from the African Union, World Health Organization, GLODERM, dermatology associations, and the African Medicines Agency Treaty Alliance attended, sharing valuable insights on advocacy opportunities for skin patient organizations.

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. The African Regional Network immediately began setting priorities for their workplan, focusing on defining pan-African patient needs, promoting African-centric skin disease awareness, and collaborating on data curation. An online meeting to discuss and approve the workplan will be held later 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. Read the full article recapping the African Regional Meeting and check out our Flickr album.

Patient Expert Scholarship – Launching in July 2024

The Patient Expert Scholarship offered by GlobalSkin empowers patient leaders through education and support. In 2024, we are pleased to financially support 14 patient leaders from 12 countries for participation in the EUPATI Patient Expert Training Programme. Learn more about the learners here.

Please stay tuned for more information about the upcoming scholarship application round for the 2025 EUPATI program that will open in July this year.

Young Patient Leaders Coffee Chat Recap

On June 5, young patient leaders from GlobalSkin member organizations came together to discuss their common challenges and needs as youth leaders. Varying levels of youth engagement and involvement are in place across the organizations, but it was clear that young people are eager to take on roles of leadership within their organizations and across the dermatology patient advocacy space.

GlobalSkin is excited to continue working with young patient leaders to better determine what supports and resources can be provided to support them in their advocacy journeys. This is essential in ensuring youth perspectives are properly considered in our work and that succession planning for our advocacy efforts is in place.

Please stay tuned for more news regarding GlobalSkin’s upcoming initiatives for Youth Engagement.

GlobalSkin EU Webinar

On June 27, 2024, at 13:00 - 14:30 CEST, GlobalSkin is hosting a capacity building webinar for our European Community Members on "European Funding Opportunities for Patient Organisations: Key Learnings" with guest speaker Gözde Susuzlu Briggs, Senior Programme Manager at European Patient Forum.

The objective of this training webinar is to equip European patient leaders with the knowledge and tools necessary to effectively identify and leverage European funding opportunities to support their initiatives and projects aimed at improving patient care and advocacy.

Please register to attend. We look forward to seeing you on June 27!

Travel Bursaries & Patient Booth Opportunity at the EADV Congress

The 2024 edition of the EADV Congress is scheduled to take place September 25-28 in Amsterdam. GlobalSkin will be present and will take part in various sessions. On September 25, a GlobalSkin Member event will take place (details to come).

For the first time, we are offering travel bursaries for GlobalSkin-Europe Community Members wishing to participate at the EADV Congress.

To be eligible, there is required commitment to attend the GlobalSkin Member event on September 25 and to host a booth at the EADV Congress Patient Organisation Area. There is a limit of 10 travel bursaries and the deadline to apply is June 30.

Please note that only one travel bursary per organization will be approved. Payments for this bursary will be sent to the traveler after the event. Members are responsible for coordinating their own EADV Patient Organisation Booth registration, accommodations and travel.

The deadline to register for a booth at the Patient Organisation Area at the EADV Congress is also June 30. For more information on the terms and conditions of the travel bursary, click here.

GlobalSkin at the WCRSD

GlobalSkin was proud to bring a truly global patient perspective to the World Congress on Rare Skin Diseases (WCRSD) which took place June 12 - 14, 2024 in Paris, France. Our delegation was comprised of 28 leaders of GlobalSkin patient organizations representing rare skin diseases from over 13 countries around the world! Our group had a highly visible presence at the Congress.

Highlights of the event:

GlobalSkin co-hosted the Welcome Reception on the opening day of the WCRSD alongside the Global Albinism Alliance to highlight International Albinism Awareness Day (June 13).
GlobalSkin and ERN-Skin PAG opened Day 2 of the WCRSD’s scientific program with the Patient Symposium - moderated by Marc Yale and Marie-Claude Boiteau and featured our inspiring patient leader speakers: Dr. Niraj Parajuli, Rare Disease Nepal; Rowena Lou Ortiz, Scleroderma Awareness Philippines; and Julio Garcia, Simplemente Amigos - Fundacion Nacional del Albinismo (Argentina).
GlobalSkin RareDERM Community dinner where Members and partners were invited to enjoy a meal together while learning from each other's projects and successes.
We were proud to support our RareDERM Community Members in attending the WCRSD with nine GlobalSkin Travel Bursaries

We look forward to building on these successes and continuing our collaborative efforts to empower our RareDERM community.

WAED Resources Now Available

On World Atopic Eczema Day 2024, we are exploring #AtopicEczemaUnfiltered. In a world where social media often presents a polished version of reality, the true challenges of living with chronic conditions like atopic eczema remain largely unseen and misunderstood.

This campaign seeks to bring to the forefront the real experiences of those battling atopic eczema every day and will be dedicated to shedding light on the untold stories of atopic eczema patients.

To access the World Atopic Eczema Day 2024 toolkit, resources and messages that will assist you with your own World Atopic Eczema Day campaign. please click here.

World Atopic Eczema Day Fund

GlobalSkin launched the World Atopic Eczema Day Fund for the fifth consecutive year! This fund financially assists our Member organizations in the planning and implementation of activities supporting this important awareness day.

The 2024 Fund is supporting 22 members from 17 countries with their awareness and advocacy efforts.

We look forward to seeing the fantastic activities and initiatives that you have planned for World Atopic Eczema Day. Together, we can make a significant impact on raising awareness and improving the lives of those affected by atopic eczema around the globe.

Championing the Patient's Voice

GlobalSkin at the PEOF Conference

GlobalSkin members and staff attended and participated in the Patient Engagement Open Forum in May hosted by the Synergist. Our CEO Jennifer Austin participated in a panel and co-led workshops on the value of patients and patient organizations in the health care system. Allison FitzGerald, GlobalSkin’s Operations Director not only helped to plan the PEOF Conference as a member of their planning committee, but she also presented in a session on patient experience data and the role of patient organizations in the development and provision of data.

Representing GlobalSkin’s Board of Directors, Dr. Ritu Jain participated in a panel on Global Patient Engagement, which along with various other conversations on patient engagement taking place at the event will help to advance the discussion on patients’ roles.

GlobalSkin Co-Hosts World Health Assembly (WHA) Side Event

On May 29, GlobalSkin and the ILDS co-hosted a side-event during the 77th World Health Assembly (WHA) in Geneva, "Skin Diseases as a Global Health Priority - NO UHC without Skin Health." The event was supported by the World Skin Health Coalition and Anesvad Foundation.

The aim of the event was to advocate for higher prioritization of skin diseases by national Ministries of Health which aligns with our goal of achieving an all-skin diseases resolution at the WHA in 2025.

This event marks a significant step in our ongoing effort to integrate skin health into the global health agenda, ensuring that no one is left behind. Please read our article to learn more about our time in Geneva during the WHA.

Read the Full Story

Update on the WHA Resolution

Following an excellent week in Geneva during the World Health Assembly at the end of May efforts continue through GlobalSkin, the ILDS, the International Foundation for Dermatology, Anesvad and the University Hospital of Geneva, to elevate the prioritization of skin diseases and conditions on the health policy agenda. We are also working with a Geneva-based Health Diplomacy Alliance to reach Member States.

GlobalSkin CEO Jennifer Austin will be in Geneva at the end of June to take part in a course offered by the Geneva Graduate Institute on "The New Diplomacy in Global Health." She will meet with representatives in the Permanent Missions of several Member States to garner support for this important initiative.

Learn More

First WHO Global Meeting on Skin NTDs Report

The report on the First WHO Global Meeting on Skin NTDs that took place in March 2023 is now available! GlobalSkin was proud to be part of the important discussions that took place during this meeting in Geneva last year. This comprehensive report summarizes the various sessions taking place at the meeting, noteworthy issues raised during discussions and key recommendations. The next WHO Global Meeting on Skin NTDs is planned for March 2025, and GlobalSkin looks forward to participating once again.

Read the Report

Uniting to Change Perceptions

World Skin Health Coalition Campaign

As a member of the World Skin Health Coalition, GlobalSkin actively participated in the #NotJustMySkin campaign in March and April 2024 to raise global awareness about the significant impact of skin diseases and conditions. Many of you signed the open letter urging health policy leaders worldwide to prioritize these critical issues.

We are delighted and proud to report that this campaign was a resounding success!

In just six weeks, we made some very significant achievements together:

The campaign reached over five million people
Campaign materials featuring data and stories of real people living with skin conditions and diseases were viewed over 17.8 million times
Over 6,800 people in 130 countries across all six World Health Organization regions signed the open letter urging health policy leaders to act.

YOU helped to make this possible! Thank you!

You can see all of our achievements in an Impact Report. Visit the Coalition website to download the Impact Report now and share it with people in your community and with health policy leaders in your country. We will be doing the same in Geneva.

GRIDD Update

The GRIDD project continues to be high on GlobalSkin’s priority list. The research team at the University of Hamburg remains focused on analyzing the data from the 2023 GRIDD Study and their early reactions are very positive about the quality of the data collected. Publishing in dermatology journals on the results from the study and on the validation of the PRIDD measure are planned for this year.

In fact, this year we have had several articles published on the project including the latest in the British Journal of Dermatology (BJD) on Further refinement of the Patient-Reported Impact of Dermatological Diseases (PRIDD) measure using classical test theory and item response theory. We are thrilled with this publication because it was chosen as journal article of the month which has several extra features that might interest members including a plain language summary and video explanation by the author. It is another step closer to helping inform the broader research community and making it accessible to those outside the community to fully understand the importance and quality of the work being done. We have also just recently heard of another publication being accepted by the BJD on this project. We’ll be sure to share that as soon as it is live!

In preparation for publicly launching the new PRIDD measure, we are developing an online and mobile app and will unveil it at the EADV Congress in Amsterdam on September 25. This is truly a momentous time for the project and for GlobalSkin and has been seven years in the making. We sincerely thank our Members without whom the measure could not have been developed and to our funding partners who believed in the need for this patient impact measure and our ability to deliver it – we are so grateful for your commitment and support.

World Skin Health Day

World Skin Health Day is a global initiative by the International League of Dermatological Societies (ILDS) and the International Society of Dermatology (ISD) that occurs on July 8 with the purpose of educating people about the significance of skin health and encouraging discussion and actions that work towards improving skin health. This year, Patient Organizations are invited to also take part.

This year’s theme, ‘Skin Health for All’, highlights the overarching campaign goal and emphasizes the importance of awareness, education and equal access to dermatological care.
Download awareness raising resources and learn more about how you can take part in World Skin Health Day here.

Opportunities & Resources

Camp Discovery for Kids and Teens with Dermatological Conditions

The American Academy of Dermatology is sponsoring six one-week sessions of Camp Discovery, a camp designed for kids and teens with chronic skin conditions like eczema, psoriasis, vitiligo, alopecia, and more.

Camp Discovery is provided at no cost to families, including airfare. Kids from the U.S. and worldwide attend for an adventure filled with fun, friendship, and personal growth.

Activities include fishing, swimming, archery, horseback riding, and nature trails, all in a safe environment that encourages exploration and confidence-building.

Referrals are made by the child’s dermatologist. Parents need to print and complete this REFERRAL FORM. If you have further questions, visit Camp Discovery’s Frequently Asked Questions or reach out directly to Janine Mueller, Camp Discovery Specialist.

Events and Awareness Days

GlobalSkin Events

GlobalSkin EU Webinar - European Funding Opportunities for Patient Organisations: Key Learnings - June 27, 2024
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

IFPA Congress (Stockholm) – June 27-29, 2024
EADV Congress (Amsterdam) - September 25-28, 2024
14th Georg Rajka Symposium on Atopic Dermatitis (Doha) - October 24-26, 2024

Awareness Days

World Vitiligo Day - June 25, 2024
World Scleroderma Day - June 29, 2024
World Skin Health Day – July 8, 2024
Alopecia Awareness Month - September 2024
World Atopic Eczema Day - September 14, 2024
World Patient Safety Day - September 17, 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

Unsubscribe

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