News from GlobalSkin
News from GlobalSkin
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December 2022
Message from the Board President

Dear Members and Stakeholders,

As 2022 comes to an end, I can’t help but reflect on how much positive change has happened this year and how much GlobalSkin has grown. This year we have supported our 209 members and encouraged the continued growth of our alliance. We have managed to overcome so many of the challenges during the pandemic, which is deemed as one of the most difficult and uncertain times in a generation.

We are so proud of our accomplishments, which were undertaken with flexibility, agility, thoughtfulness, and grace during unprecedented times. Through it all, we actively engaged all our partners and received continued support of our community thanks to all of you!
Read Full Letter
 
WHO Meeting on Skin NTDs

GlobalSkin has been invited to participate in the first World Health Organization Meeting on Skin Neglected Tropical Diseases (NTDs) – a hybrid event taking place online and in Geneva, March 27-31, 2023. Other patient organizations that support people living with NTDs and other common skin conditions are also welcome to participate and must register by December 18 here.

In June 2022, the WHO published a strategic framework for integrated control and management of skin-related neglected tropical diseases (skin NTDs) that identifies opportunities to integrate approaches for control and management, including common learning platforms, capacity-building for case detection and delivery of treatment. The objective of the March meeting are: 

  • To share progress and challenges in the implementation of integrated activities on skin NTDs at the country level; 
  • To present advances in research of skin NTDs;  
  • To plan the implementation of the skin NTD framework;  
  • To strengthen networking among disease experts.  

Additional details on the meeting can be found here.
 
Year in Review 2022

GlobalSkin’s Year in Review 2022 event held on November 29, was well attended by Members, funding partners and strategic stakeholders. We highlighted this years’ accomplishments, in-person connections and growth of our membership.  We brought to a close our 2020 – 2022 Strategic Plan with excellent results and look forward to starting to implement our new five-year strategic plan in 2023.  

If you did not have a chance to attend live – you can watch the event replay here and learn more in the GlobalSkin Year in Review 2022 Report. 
Read the Report Here 
 

GlobalSkin is very pleased to announce that registration is now open for our GlobalSkin Conference ELEVATE 2023 taking place June 1 – 4, 2023 in Brussels, Belgium.  
 
Currently, we are inviting one person per member organization to register to attend ELEVATE 2023 to ensure that we have representation from as many Members from as many regions and diseases as possible. If a second representative registers, they will be placed on a waitlist, and we will keep you informed if we have capacity for the second attendee. 
 
GlobalSkin will support our Members’ attendance at the Conference, by providing an invitation letter for visa applications, hotel accommodation and, thanks to our generous funding sponsors, we are offering a Travel Bursary Program to help offset travel costs. 
 
Special Note for Members:
 
We will hold a members-only Conference Coffee Chat on January 10, 2023, at 10:00 EST | 16:00 CET - please save the date and the meeting link.
 
 
Learn more & Register here
 
GRIDD - Global Research on the Impact of Dermatological Diseases

It is an exciting time for the Global Research on the Impact of Dermatological Diseases (GRIDD) project as we are in the final stages of approving the new Patient-Reported Impact of Dermatological Diseases (PRIDD) measure!  After five years of research and analysis, we are thrilled that the 16-question PRIDD measure is now complete!    
 
We are truly grateful to our Members (and their patient communities) and of course our funders who have been involved for so many years. None of this would be possible without your support. We’d also like to thank the GRIDD Research Team’s co-lead researchers Prof. Matthias Augustin (Hamburg University) and Prof. Chris Bundy (Cardiff University) and their amazing researchers (Nirohshah Trialonis-Suthakharan and Dr. Rachael Pattinson) for the many years of dedication and work that went into the development of this new measure in dermatology!  
 
We are now preparing for the global GRIDD Study, the collection of patient data using the new impact measure that will take place in 2023. To prepare for the Study, PRIDD will be translated, validated, and culturally adapted in 16 languages to be used for global data collection. The GRIDD Study will be launched in late May 2023, and it is our intention to reach 10,000 participants.  
 
Our Members will be crucial to the success of the study. With this in mind, we will create resources and tools to assist in patient recruitment. We are very excited to see this essential study come to life after so many years of effort, and we look forward to sharing more with you in coming months.     
 
We are excited to also share that the GRIDD Project has been published for a second time in ActaDV Journal. This publication is about Phase 2: A Qualitative Concept Elicitation Study. Please see the link to the paper here.  
 
GlobalSkin continues to look for opportunities to present on GRIDD and to raise the project’s profile and encourage participation in our study.  Two such opportunities took place over the last several months including at the ILDS World Skin Summit in Peru in October and the Digital Skin Summit in December. 
 
Learn more about GRIDD
 
GlobalSkin Member Programming
Membership Milestone

GlobalSkin is now over 200 Members strong! We are thrilled to welcome seven new Patient Organizations to our alliance this month. GlobalSkin now proudly serves 209 Members representing 67 countries, from 57 disease areas! Since 2020 we have seen a 30% increase membership. Learn about all our Members by visiting our Membership list here.

Members' Survey

In January 2023, GlobalSkin will send Members a short survey which will help us benchmark and track our successes as we begin implementation of our new five-year Strategic Plan.  

All Members will receive a direct email in January with more details – stay tuned and thank you in advance for sharing your views.
 
GlobalSkin Impact Fund

The 2023 Member Impact Fund application process took place in November and once again was a great success! We received and approved grant applications for 35 projects, in 21 countries representing 13 disease areas for projects that will be completed next year. 

Recognizing our wide-reaching and diverse membership, and the unique financial challenges faced by Members in low, to lower-middle income countries, GlobalSkin has also provided members from these countries access to more immediate funding options.

We look forward to the incredible, impactful projects that will improve the lives of dermatology patients around the world.
Learn about the 2022 projects here
 
GlobalSkin Communities
Community Advisory Committees  
 

GlobalSkin Communities in Atopic Eczema, RareDERM and GlobalSkin-Europe work closely with dedicated group of volunteers that comprise our three Advisory Committees. All Committees continue to meet regularly, and members help guide the work taking place in our communities. As 2022 ends, and we look forward to our 2023 activities, we want to express our gratitude for your time and commitment as we work towards expanding our collective influence through these communities.
 
World Atopic Eczema Day 2022

September 14, 2022, marked the fifth World Atopic Eczema Day! This year’s campaign focused on raising awareness about the burdens of atopic eczema faced by patients and caregivers.  GlobalSkin’s social media campaign in 2022 grew with a year over year 46% increase in impressions across all social channels and we were excited to see the campaign reach 87 countries.  
 
GlobalSkin also directly supported 22 Members in 16 countries and 4 regions through the World Atopic Eczema Day Fund, providing up to $4000 CAD each for their local World Atopic Eczema Day activities and digital advocacy initiatives.    
 
We are pleased to share our World Atopic Eczema Day 2022 Report where you can find all the details. 
Read the Report Here 
International Society of Atopic Dermatitis (ISAD)

In October, GlobalSkin attended the International Society of Atopic Dermatitis (ISAD) Symposium in Montreal, where we connected with ten Members of GlobalSkin’s Atopic Eczema Community.   Along with attending the Symposium, Members participated in a Community Member Workshop where our patient leaders explored the many facets of digital advocacy and reflected on how to use it within their own organizations.  
 
GlobalSkin co-hosted a luncheon with ISAD and the Global Parents for Eczema Research (GEPR) / The Global Initiative to Improve Eczema Care. The 70 attendees included healthcare professionals, patient organization leaders, and researchers and explored areas of intersection, alignment, and potential collaboration around research priorities in atopic eczema. Also, GlobalSkin had a booth in the exhibition hall where staff promoted the initiatives of the GlobalSkin Atopic Eczema Community and the GRIDD project.

Atopic Eczema Documentary: Skin Our Barrier
to the World

GlobalSkin continues to showcase the Atopic Eczema Documentary produced in 2022, at every opportunity. We are currently developing a longer-term strategy around this powerful advocacy tool and will be sharing tools and resources in 2023 for our Atopic Eczema Community to continue leveraging the documentary.
 
For those who have not yet seen it we encourage you to do so, and don’t forget to like and share the video to help us reach a wider audience. 
Watch the Film Here
 
Community Event Replay

On November 28, GlobalSkin hosted a RareDERM Community virtual event “Amplify Your Voice for Rare Skin Disease” where attendees heard presentations on findings of the RareDERM Community environmental scan and insights from the GRIDD Delphi study related to rare dermatological conditions. 

A facilitated discussion led attendees to share their observations about the two sets of data and then generate ideas around ways to work together for better care for rare dermatological patients.  Members can watch the replay by logging into their account and clicking here. 
Rare Disease Day

Rare Disease Day is February 28, 2023. GlobalSkin will once again engage in this awareness day and help amplify the voices of our RareDERM Community by bringing attention to rare dermatological conditions and diseases.

Members can expect to receive campaign materials including social cards that they can personalize and use in their own Rare Disease Day campaigns.

We look forward to sharing your events, patient testimonials and stories. More to come in early 2023. 
 

GlobalSkin has continued to be active in the European health policy and advocacy space ensuring the voice of dermatology patients is heard and opportunities for input are identified.   

In November we attended the European Medicines Agency annual meeting of Patients' and Consumers' Working Party (PCWP) and Healthcare Professionals' Working Party (HCPWP), in Amsterdam, where we continue to monitor and provide feedback on patient involvement in medicines development and other topics of interest.  

On December 8-9, GlobalSkin attended a meeting of EFPIA's Patient Think Tank in Brussels.  Topics of discussion include the European Health Data Space (EHDS), patient engagement and EU HTA Cooperation: involvement of patient organisations.  
 
GlobalSkin has also recently been invited to sit on the European Patients Forum Working Group on Universal Access to Healthcare where we will inform, guide and support EPF’s work in advocating for universal access to healthcare for all patients.  We look forward to contributing and bringing the voice of dermatology patients to these important conversations.  
 
Strategic Partnerships
ILDS World Skin Summit
 

In October, GlobalSkin attended the ILDS World Skin Summit which took place in Lima, Peru. This is a special and unique global event that brought the International League of Dermatological Societies (ILDS), Members - leaders of national dermatology societies - and Partner organizations together.

The delegation of patient organization leaders participating at the Summit included GlobalSkin’s Board President Marc Yale (IPPF), Board Director Tran Hong Truong (Vietnam Psoriasis Network (PSORVIET), and CEO Jennifer Austin. We were joined by GlobalSkin Members, Antoine Gliksohn (International Albinism Network), Martin Petroco, (Asociación Civil para el Enfermo de Psoriasis and Asociacion Civil de Dermatitis Atopica Argentina) and Carolina Huaman and Maria del Pilar Arinabar (Asociación de psoriasis y artritis psoriásica - Perú - APAPSO PERÚ).

Jennifer presented at the two-day event. This included speaking about the importance of patient organizations and how they can be partners to HCPs in supporting dermatology patients.  She also spoke on the GRIDD project raising the profile of the project and encouraging participation in the GRIDD Study that will take place in 2023.

 
Global Atopic Dermatitis Atlas

The first global report on atopic dermatitis was published by the International League of Dermatological Societies (ILDS), in close collaboration with the International Society of Atopic Dermatitis (ISAD), the International Eczema Council (IEC), the European Taskforce for Atopic Dermatitis (ETFAD) and the International Alliance of Dermatology Patient Organizations (GlobalSkin), marking the start of the Global Atopic Dermatitis Atlas.  This report comprehensively summarizes the disease burden, geographical gaps in prevalence data, the impact on patients’ lives and available treatments. GlobalSkin looks forward to continuing its partnership in this important initiative in 2023.    
 
World Congress of Dermatology

The World Congress of Dermatology (WCD) will be held in Singapore from the 3 to the 8 of July 2023. ILDS is offering Patient Organizations the opportunity of exhibiting in the WCD2023 Patient & Dermatology Community Village.

Patient Organisations are invited to book a complimentary booth which includes 3 badges with full access to the scientific sessions To express interest, please contact nicole.sudiacal@globalskin.org.

Members of Patient Organizations can also register here to take advantage of the special reduced rates.

 
Politico Spotlight

On November 9, Jennifer Austin, GlobalSkin CEO, participated in a Politico and Sanofi Regeneron co-hosted event in Brussels: Chronically Underserved – Bridging the Gap in Chronic Care.  
 
She took part in a multi-stakeholder discussion entitled, From Awareness to Action: Policy Change on Atopic Dermatitis with panelists: MEP Tomislav Sokol (European People’s Party, Croatia); John Ryan (Deputy Director General for Health, European Commission); Dr. Stephan Weidinger (dermatologist); and Marie-Hélène Fandel (Senior Director, Corporate Public Affairs Europe, Sanofi).  Discussions centered on the need for data, awareness and the burdens of atopic eczema on patients, caregivers, health systems and the European Union economy.   

Our member colleague Susanna Palkonen from EFA participated in a separate panel at the event. 
Watch the event here
 
Events and Awareness Days

GlobalSkin Member Events

Events

Awareness Days


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 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 209 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.

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