September 2022
Message from the Board President

Dear Members and Stakeholders,

I’m excited to look back on how much GlobalSkin has already accomplished this year. With 198 Members from 65 countries representing 54 disease areas, together we have begun to change the myths and misperceptions about the true burden of dermatological diseases. 

We have been hard at work developing our five-year Strategic Plan that will carry our organization forward. With the help of our Members and partners, GlobalSkin’s vision of a world where people with dermatological conditions are healthy and fulfilled is clearer than ever.

Read Full Letter
 
GlobalSkin Documentary 

The GlobalSkin Atopic Eczema Community took on a very exciting project this year. Together, we produced a 10-minute documentary about the burden of living with Atopic Eczema as told by six patients living with the condition – each from different regions of the world. 
 
On September 1st, a Special Film Premiere Event of the documentary was held, as over 100 audience members (patient organizations, patients, stakeholders and partners) watched stories from people in the United States, New Zealand, Colombia, Slovenia, Kenya, and Hong Kong SAR, China as they shared how the impact of Atopic Eczema presents in their daily lives.  
 
Following the documentary screening, we hosted an interactive panel discussion featuring participants, patient leaders and the film makers who all shared their perspectives on the documentary and what it meant for them to be involved. 
 
It was a powerful and impactful event, bringing together our community that is focused on improving the lives of people with Atopic Eczema around the world. 
Watch the Replay Here
 
GlobalSkin 2023 Conference - Elevate
Save The Date 
 

“ELEVATE” - GlobalSkin’s 2023 Conference is the premiere event for dermatology patient organization leaders that will Elevate the global dermatology patient voice, Champion the common interests of people affected by dermatological conditions globally and Unite global dermatology stakeholders to bring about transformative change for patients.  

June 1-4, 2023 
GlobalSkin’s 2023 Conference – ELEVATE 
Crowne Plaza Airport Hotel, Belgium, Brussels 

This in-person event will focus on strengthening connections among members, capacity-building workshops, interaction with partners, updates on the latest issues facing dermatology patients and patient organizations, and, importantly, evidence-based advocacy training with our members for the coming Global Research on the Impact of Dermatological Diseases (GRIDD) data.  

Designed for both experienced and novice patient leaders, this conference will offer sessions at various levels of mastery to ensure value and relevance for all who attend. We look forward to this long awaited in-person connection with all GlobalSkin Members!  
 
Registration will open soon, but until then please save the date in your schedules.  
 
Learn more here
 
GRIDD - Global Research on the Impact of Dermatological Diseases

Phase 4 of the GRIDD project is nearing completion and we are very getting closer to our goal of a having a new impact measure in dermatology. The final phase of psychometric testing of the measure has now closed. Thanks to our Members, we had reached the maximum participation allowed of 500 participants in Survey 1 and over 260 in Survey 2. The data from results of the psychometric testing are now with our researchers who are cleaning and analyzing the data it and will make any final edits to the PRIDD measure.
 
By the end of this year, we are likely to have a final PRIDD measure! We could not have done this without the support of our Member Community!  

Currently we are working diligently to get ready for translation and cultural adaptation once the final measure is ready. We are also working with the Patient Advisory Committee to create a strategy to launch the PRIDD survey in 2023, including how we can support you in getting your patients to participate to their perspectives are included in the final data collection and analysis.

 
Learn more about GRIDD
 
Thought Leadership

GlobalSkin is a proud member of the planning committee for the upcoming ILDS World Skin Summit taking place in Lima, Peru, October 13-15. This is a special and unique global event that will bring the International League of Dermatological Societies (ILDS), Members - leaders of national dermatology societies - and Partner organizations together. The Summit provides an opportunity for leaders to share experiences and develop strategies to improve skin health at local, national, regional, and global levels. 
 
A delegation of patient organization leaders will also participate at the Summit including GlobalSkin’s Board President Marc Yale (IPPF), Board Director Tran Hong Truong (Vietnam Psoriasis Network (PSORVIET), and CEO Jennifer Austin. They will also be joined by GlobalSkin Members, Antoine Gliksohn (International Albinism Network); Rachel Ogola (Eczema Society of Kenya); and Martin Petroco, (Asociación Civil para el Enfermo de Psoriasis and Asociacion Civil de Dermatitis Atopica Argentina). The goal is for participants to work together towards a vision of attaining the best possible skin health for all people around the world.  

The 25th World Congress of Dermatology is taking place in July 2023, in Singapore. Jennifer Austin, GlobalSkin CEO is an active participant on the Scientific Program Planning Committee for this prestigious event.

Having the patient voice represented during the planning of the WCD will ensure that patient advocates and disease experts have opportunities to be part of the scientific program, the opportunity to attend the Congress, and to have an exhibition booth. 

GlobalSkin’s leadership team is working closely with the ILDS Leadership to ensure the patient perspective is represented and present in Singapore.   
 

The European Academy of Dermatology and Venereology (EADV) Congress 2022 in Milan, Italy was the eighth Congress that GlobalSkin Board Directors and senior staff have attended.

GlobalSkin’s objective during the EADV Congress was to connect with key stakeholders and bring attention to the work we and our Member organizations undertake to improve the lives of patients living with dermatological conditions.

This year’s Congress was an inflection point for GlobalSkin and our Members as there were many new opportunities to bring the Patient Perspective to the attendees at the Congress.   

Read the full article to learn about highlights and view the Flickr Album from this year’s events.

Read more here

The Global Dermatology Coalition has been making steady progress since the public announcement of its formation in Geneva in May 2022. Partners in the Coalition continue to grow, bringing the current number to 22 organizations and companies. GlobalSkin as the Coalition Secretariat continues to facilitate the initiatives of the Coalition. Coalition Partners will meet in October to set their strategic goals and identify initiatives that will be undertaken as they work towards the objective of raising the prioritization of dermatology on the global health agenda. 

The Global Dermatology Coalition was one of the main themes during the recent Skin Matters Reception in Milan during the EADV Congress where Coalition Steering Committee Chair Marc Yale and Prof. Lars French, Steering Committee Member, and President of the ILDS gave remarks to the assembled guests, noting the importance and historic nature of this multi-stakeholder group. 

Read more here
 
GlobalSkin Member Programming

GlobalSkin Member Programming focuses on growing, engaging and building a sustainable, global patient organization community. We expect to reach the 200 Member milestone in the coming weeks!
 
Our goal as always is to provide programming that helps elevate and professionalize patient organizations and dermatology patient advocates.  
 
GlobalSkin is a Member-led organization that prioritizes our Members’ needs. We invite all Members to familiarize themselves with current programming including the GlobalSkin Member Impact Fund and tools available to them, especially in Patient Leadership through the “Practical Solutions to Strengthen Your Organization” workshop series; the Patient Expert Scholarship through the EUPATI Expert Training Programme; Fundraising E-Learning Series; Webinars; Creating a New Patient Group Toolkit; and more! 
 
Members are invited to log into the Members Only area of our website to learn more and take advantage of all of these opportunities!    
  
If you are not a current member and are interested in our Membership, please click here to learn more. 
 

One of GlobalSkin’s most successful and popular Programs is its Member Impact Fund. Launched only two years ago, this project-focused grant program directly supports our Members in the impactful work they do for their patient communities.

In the 2021/2022 year, we are proud to financially support 30 patient organizations’ projects from 21 countries and 21 disease areas through this Fund. Projects funded fall into one of four categories: event planning, communications and marketing, organizational development, and advocacy.

As projects are completed, GlobalSkin features their inspirational and powerful stories. We invite you to read about recently completed projects.

"The GlobalSkin Member Impact Fund was important for our organization because we really struggle to get funding here in South Africa, so this really helps us to help our patients.” - Maryna Debeer, XP Society, South Africa.

The next call for grant applications will open on October 31, 2022.
 

To support patient leaders, we are offering Members an exciting resource called the “Patient Leader Workshop Series”, co-hosted by GlobalSkin and IFPA.  
 
This series of four one-hour workshops feature a variety of guest speakers on Practical Solutions to Strengthen Your Organization. Members can join live zoom presentations and also access all the videos on-demand in the Members-Only section of the website. 
 
Watch the replay of the latest Workshop on, “Activating Volunteers: Accelerating Your Mission”, with Expert patient speaker Trisha Shivas, Chief Strategy Officer of the Foundation for Sarcoidosis Research.  
 
Watch the replay now 
(You must be logged into the Members Only area) 
 

The Patient Expert Scholarship (formerly known as the Continuous Learning Series) is an exclusive micro-grant program that will financially support five patient leaders up to $4000 CAD to take part in EUPATI’s Fellows Programme. This includes financial support for the completion of all online courses as well as travel and accommodation for an in-person graduation event.

Congratulations to the recipients of the Patient Expert Scholarship!

Gaone Mateba, Beyond Vitiligo – South Africa

Jorge Perez, Vitamigos – Cuba

Kelly Barta, Coalition of Skin Diseases – USA

Melanie Funk, Eczema Support Australia

Ravi Kannangara, Skin Sri Lanka

GlobalSkin continues to focus on diversity, equity, inclusion, and belonging initiatives this year, and has hosted three special regional meetings with Members. On September 23, GlobalSkin co-hosted the latest session with Board Director Gaylord Inena Wa Inena (CORBETTA RDC), for our Members in Africa where the focus was on the experiences and needs of patient leaders in that region.  
  
This meeting follows on others held in Latin America with Board Director Guillermo Gutierrez (Fundapso) in May, and a session with patient organizations in Asia co-hosted with Board Director, Ritu Jain (Debra International) in June.   
 
We are grateful to our Members for their input during these region-specific meetings, as it allows GlobalSkin leadership to plan for the most inclusive and equitable Member Programs and support possible.  
 
GlobalSkin Communities

World Atopic Eczema Day took place on September 14, 2022. A big thank you to all GlobalSkin Members and Partners who took part in this year’s campaign. We are thrilled with early analytics reporting which shows that this year’s campaign had more than 4.4 million impressions on Facebook and Instagram, over 600,000 impressions on Twitter, and over 78,000 impressions on LinkedIn. This year we also added our YouTube channel into the campaign, where we featured the Atopic Eczema documentary which had over 480,000 impressions!

We are proud to share that GlobalSkin supported 22 Member organizations, located in 17 countries, through the 2022 World Atopic Eczema Day Fund. This direct financial assistance supported Member activities during this awareness day. We look forward to sharing a report about their amazing projects in the very near future.
 

Sanofi Regeneron is calling on the public to help people with #atopicdermatitis feel more confident with their skin.

Submit an idea to the 2022 ‘Agents of Change’ AD Challenge to help people with atopic eczema build self-esteem. Grant recipients have the opportunity to receive funding of up to $10,000 to support the development and implementation of their proposed solution. Grant funding provided will vary based on the scale of the idea submitted.

Please note that the deadline for submissions is Oct 26, 2022.
 

GlobalSkin is looking forward to connecting in person with the Atopic Eczema Community at the
12th International Symposium on Atopic Dermatitis ISAD 2022 in Montreal, October 17-19. We were pleased to have offered travel bursaries for our Community Members to attend the Symposium and participate in research sessions and important discussions about Atopic Eczema. Along with attending the Symposium, Members have also been invited to attend a GlobalSkin side-event in Montreal. This Community Member Workshop gives patient leaders an opportunity to explore different advocacy methods in their regions using the digital assets like GlobalSkin’s
new Atopic Eczema documentary.   
 
Together with ISAD and the Global Parents for Eczema Research (GEPR) / The Global Initiative to Improve Eczema Care, GlobalSkin is co-hosting a luncheon on October 17, on the first day of the Symposium. This event will bring together a multi-stakeholder group (healthcare professionals, patient organization leaders, and researchers) to explore areas of intersection, alignment and potential collaboration around research priorities in atopic eczema. We are looking forward to our Members taking part in this important conversation. Members are reminded that they must register for ISAD pre-meeting, Organization of Care, to be invited to register for the luncheon. 
 
Register here
 
GlobalSkin Event

GlobalSkin is pleased to be planning a RareDERM Community event for the beginning of November. (More details to come.)

We will bring the community together online to engage on the prevalence of co-morbidities in patients with rare skin diseases and discuss the implications for the RareDERM Community.

This discussion will be expertly facilitated and will include a presentation of data from GRIDD Delphi and the RareDERM Community Environmental Scan setting the stage for further areas of exploration, connections and intentions for the Community.
Open Online Course

In the context of European Joint Programme on Rare Diseases (EJP RD), Foundation For Rare Diseases, ERN Ithaca and ERN Genturis have co-developed the MOOC "Diagnosing Rare Diseases: from the Clinic to Research and back."

Available until December 3, this course is designed for individuals with a keen interest in diagnostic research and rare diseases.

Learn more here

 

 
 

On September 7 in Milan, GlobalSkin-Europe held “Pitching the Next Great Idea”, the first in-person meeting of our newest Community. Fifteen GlobalSkin Member organizations were in attendance and ten patient leaders presented their innovative projects in the field of patient advocacy and capacity building.  

GlobalSkin thanks everyone for their engagement and enthusiasm. An event report will be shared with the Community and will include a compilation of presented projects to help spark creativity and new ideas for Members. 
 

European Medicines Agency (EMA)

We are pleased to share the Council for International Organizations of Medical Sciences (CIOMS) report on “patient involvement in the development, regulation and safe use of medicines”.

The report is the result of four years of work with patient group leaders, academics, industry experts, regulators and other stakeholders. It describes the importance of systematically involving patients throughout a medicine’s life – from its early development through the regulatory process to ongoing monitoring and safe use in everyday healthcare.

Download it here
 
Events and Awareness Days

GlobalSkin Member Events

Events

Awareness Days
 
Thank you to our 2022 Core Partners.

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 198 patient association members ─ located in 65 countries representing more than 54 disease areas ─ to reach more patients, and provide them with greater support, education, and advocacy.

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