Dear GlobalSkin Members, 

As I write this, I can’t believe that it is the end of September already! It has been a very busy year so far and if that is any indication of what the rest of the year holds, we will certainly finish 2023 in a very exciting and noticeable way. I’m pleased to share that six GlobalSkin Board Directors participated actively in GlobalSkin’s events and meetings at the World Congress of Dermatology (WCD) in Singapore in July. I was honored to have the opportunity to represent all of you as I delivered the first plenary keynote speech ever made by a patient advocate at the WCD.

To make the GRIDD Study more accessible, we’ve launched a new registration feature! To take the survey, adult dermatology patients can now register at https://globalskin.org/GRIDDStudy using their WhatsApp number. In doing so, the survey link will be sent directly to that number and participants will be guided straight to the survey.

The GRIDD Study deadline has been extended until December 31, 2023.

If you have not had a chance to communicate about the GRIDD Study to your patient community, there is still time to do so. Ensure your region and disease area are included in this unprecedented global data set. Use the toolkits and resources available at https://bit.ly/GRIDD-Toolkits.  
 
If you’re having an in-person event, to support your patient in completing the survey here are some resources you can download and print. 

On September 21, Jennifer Austin, GlobalSkin CEO attended the 2023 UN High-Level Meeting on Universal Health Coverage (UHC) at the United Nations in New York. You can read the UHC Declaration here. For Jennifer, being among presidents, prime ministers and health ministers from all around the world reinforced the absolute necessity of strong primary health care being the key to Universal Health Coverage. Humanity must have access to the care they need, when and where they need it, without it causing financial hardship. While there is much work to do to achieve the 2030 Sustainable Development Goals (SDGs) goals, it is evident that governments and civil society can do this together. 

While at the UN, Jennifer also attended the Rare Diseases International official side meeting on "Engaging the UN System and Member States to Achieve UHC for PLWRD: A Blueprint for Leaving No One Behind". The event was co-organized with the NGO Committee for Rare Diseases, EURORDIS-Rare Diseases Europe, and Federación Española de Enfermedades Raras (FEDER).  She connected with fellow dedicated dermatology patient advocates: Antoine Gliksohn - Global Albinism Alliance, Vlasta Zmazek - Debra Croatia, Frida Dunger Johnsson - IFPA, and Kathleen Gallant – IFPA.

Congratulations to Rare Diseases International and EURORDIS for hosting an excellent side event! 

Following discussions and enthusiastic support from the World Health Organization, GlobalSkin is working with the ILDS, the International Foundation on Dermatology, NGO Network for Skin Neglected Tropical Diseases Network (NNN) and the Anesvad Foundation to pursue an all-skin diseases resolution to be considered at the World Health Assembly (WHA), potentially as early as 2024.  

The resolution will call for dedicated health investment to expand expertise, particularly among primary health care workers, enabling them to diagnose and support those living with skin diseases.  

This dedicated group is now working closely with member states from all six WHO regions to submit the resolution for consideration as an agenda item for the World Health Organization’s Executive Board.  This body will decide if the resolution will be on the agenda for the 2024 World Health Assembly.    

Having a resolution passed at the World Health Assembly would commit member states to taking action on addressing the burden of skin disease in their countries. We will continue to keep GlobalSkin Members updated on this fluid and important topic as things progress within the WHO system.

For the fourth year in a row, GlobalSkin will once again offer the Member Impact Fund. We will be accepting applications for 2024 projects, starting on November 8. Keep an eye out for more information to come!
  
We are currently receiving the 2023 Impact Fund project reports and wish to congratulate Members on the incredible work they are doing to support their patient communities.

As a reminder for 2023 projects, the deadline to submit your final report is October 31. Please reach out to our Grant Coordinator, Amal Shah (amal.shah@globalskin.org) for any Impact Fund related questions.   

On August 2, GlobalSkin launched the Patient Expert Scholarship for its second year. This is an exclusive microgrant program that financially supports patient leaders to take part in the EUPATI Patient Expert Training Programme. 
  
There was overwhelming interest and in less than an hour, all applications for the scholarship program were received. This year we will be supporting a total of 13 Members representing 5 regions across the globe. Marc Yale, Board President & Dr. Gaylord Inena, Board Director have agreed to each lead a learning group of 6 to 7 scholarship participants.   

Congratulations to the patient leaders who will participate in the 2024 EUPATI Patient Expert Training Programme! 

To continue GlobalSkin's focus on diversity, equity, inclusion, and belonging, this year we have been focusing on building regional capacity. During our GlobalSkin Conference ELEVATE 2023, we held regional meetings where Members from each region participated in a facilitated dialogue about regional needs and priorities.

The momentum continued at the World Congress of Dermatology with Asian GlobalSkin Members meeting together to identify further priorities.

The African Members continue to make plans through online meetings, and the European Members will come together for an event at the EADV. GlobalSkin looks forward to supporting the continued growth of regional collaborations.

The 32nd EADV Congress is taking place 11-14 October 2023 in Berlin. GlobalSkin looks forward to being present at the Congress, where we along with many Member organizations will bring the patient perspective to the forefront. We will network with doctors and specialists as well as industry partners. We are also planning several events that Members in attendance are invited to attend: 

- GlobalSkin-Europe Community Workshop “Building Stronger Bonds: Fostering Effective Partnerships between Patient Organizations and Pharma Industry” (October 11, 15:00-17:00) RSVP HERE (open to patient organization members only) 

- GlobalSkin Skin Matters Reception (October 11, 17:30-19:30)
RSVP HERE (open to all GlobalSkin stakeholders) 

- Co-organized GlobalSkin-EADV Session (October 12, 8:30-10:00) 

- EADV Patient Advocacy Task Force Meeting

- GlobalSkin Booth - Patient Organization Area 

- GRIDD Research project poster

Focusing on the EU initiatives to address non-communicable diseases is crucial for dermatology patients as it can lead to improved access to preventive care, early detection, and treatment options, ultimately enhancing their overall skin health and well-being. EU Parliament urges renewed focus on prevention of non-communicable diseases.
Prevention efforts are key to tackling the burden of non-communicable diseases (NCDs) in Europe, according to a draft report presented by EU lawmakers on Wednesday, August 30.

Learn more here.

World Congress on Rare Skin Diseases (WCRSD)

GlobalSkin, in collaboration with our RareDERM Members, Marie-Claude Boiteux, Cutis Laxa Internationale and Antoine Gliksohn, Genespoir, has begun planning for the second World Congress on Rare Skin Diseases (WCRSD) which will take place June 12-14, 2024, in Paris.  
  
After the great success of the inaugural WCRSD in 2022, GlobalSkin is eager to continue the momentum of including the patient perspective in the congress program.  
More details will be shared soon.