News from GlobalSkin
News from GlobalSkin
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March 2021
Message from the Board President

Hello!  It was lovely to see so many Members, partners and stakeholders at the virtual retirement party we held on March 10th for Christine Janus.  It was a fun event celebrating Christine’s achievements as a patient advocate in dermatology.  We will miss our founding CEO but wish her much happiness and new adventures in retirement.

As you know, when I announced Christine’s retirement earlier this year, I shared that our plan was to hire a permanent CEO by the third quarter of 2021. Since that time, the Executive Committee has reconsidered this timing due to ongoing global uncertainty related to the pandemic.
Read Full Letter
 
Year In Review 

GlobalSkin celebrated its fifth anniversary as an organization in 2020, and as the world navigated through the challenges of the pandemic, our Community continued to persevere through mutually supportive efforts. Read about our successes, accomplishments and newly launched responsive programs in the GlobalSkin Year in Review 2020.
 
Read More
 
GRIDD - Global Research on the Impact of Dermatological Diseases
Delphi Data Collection Continues
 

The GRIDD Phase 3 Delphi launched in December 2020 with Survey #1 and received input from 1154 adult dermatology patient respondents. Participants were located in 66 countries and represented over 91 dermatological conditions.

This is the largest number of respondents to take part in a GlobalSkin survey to date and GRIDD co-lead researchers Dr./Prof. Matthias Augustin (Hamburg University) and Prof. Chris Bundy (Cardiff University) are very happy with these results. The GRIDD Team is very grateful to GlobalSkin Members whose recruitment efforts were instrumental in the success of the Delphi.
 
Learn About Next Steps
 
GlobalSkin Virtual Conference 2021
GlobalSkin Virtual Conference 2021

While we are not yet ready to see one another in person in 2021, we still look forward to connecting with the GlobalSkin  Community in a virtual setting.    

The GlobalSkin 2021 Virtual Conference will bring together  patient leaders for a dynamic, inspirational, and interactive event, taking place on Thursday June 3, 2021*

The team is currently developing an engaging half-day program, and we anticipate registration will open on April 15, 2021.  We encourage you to mark your calendars and we look forward to sharing more details soon!

(* date change since the last Members Bulletin) 
 
GlobalSkin Member Community
Member Impact Fund

GlobalSkin is very proud to highlight four recently completed projects which are supported by the Member Impact Fund.

  • AADA (Asociación de Afectados por la Dermatitis Atópica) - Spain
  • Vitiligo Support and Research Group - Vitamigos - Cuba
  • International Pemphigus & Pemphigoid Foundation - International
  • Vereniging voor Icthyosis Netwerken - Netherlands

We are inspired on a daily basis by how our Members support their patient communities. Congratulations to all recipients.

Learn about these projects
Atopic Eczema Community

Atopic Eczema Virtual Coffee Chats continue to keep Members connected and engaged in 2021.These quarterly facilitated sessions offer opportunities for real time discussions on topics of the day. 

Planning is currently underway for World Atopic Eczema Day 2021 (September 14) along with GlobalSkin's World Atopic Eczema Day Fund.  The Fund offers financial support to GlobalSkin's Atopic Eczema Members during their annual awareness campaign.  

The Fund submission period will open in June and projects will be completed in September 2021 related to World Atopic Eczema Day. 

Read more
GlobalSkin-Europe

Patient leaders located in Europe gathered twice in early 2021 (January and March) to take part in facilitator-led roundtable sessions. Patient leaders discussed priorities in the European region related to joint advocacy actions and organizational capacity building.

A Patient Leader Advisory Committee is being established to help guide the development of a GlobalSkin-Europe three-year strategy.

GlobalSkin is thankful to all European Members for their thoughtful contributions and collaborations.

Learn more

RareDERM Community

GlobalSkin’s RareDERM Community participated in Rare Disease Day on February 28, 2021. GlobalSkin created an awareness day toolkit for Members to use to enhance their own campaigns.

The RareDERM Environmental Scan will be completed in coming weeks. The final  phase of the scan begins this week and includes gathering perspectives from the entire RareDERM Community. Members will be contacted directly about this opportunity.

Thank you to the very dedicated patient organizations for their time and input.

Learn more
 
Co-Hosted Webinars
Webinar Series

As part of GlobalSkin’s Rare Disease Day 2021 programming, a co-hosted webinar was offered with the International League of Dermatological Societies (ILDS). 

“Creating the Rare Disease Movement: The Power of the Patient Community”, with guest speaker Dr. Aymé, Founder of Orphanet.

The event attracted a large audience and was attended by both patient leaders and the physician community via the ILDS. The recording can be accessed via GlobalSkin’s YouTube Channel for those who missed it.  
 
Webinar Series

The next webinar co-hosted by GlobalSkin and the ILDS will take place on:

April 14, 2021 at 11:00 am EST| 17:00 CET 

“Lessons Learned about the Integrated Care Management of Skin Patients Through the Lens of Atopic Dermatitis”.

With presenters:
Professor Dr. Dagmar Simon & Ms Kathin Thorman, MaS and PhD student. 

Members will receive registration details soon.

 
Thought Leadership
COVID-19 Roundtable


GlobalSkin hosted a multi-stakeholder gathering on February 26, 2021, bringing together dermatology patient organizations, industry representatives, researchers and physician stakeholders.

Following upon the December 2020 conversation, the group continued the dialogue about opportunities that COVID-19 has created to promote better understanding and prioritizing of skin conditions.

A small Working Group is being established to take these discussions to the next level including the concept of coalition building and defining potential strategic priorities.
WHO Collaborative Global Network for Rare Diseases (CGN4RD)

In 2021, Rare Diseases International is launching CGN4RD Panel of Experts, an inclusive and global body composed of patient advocates, clinicians, researchers and health professionals from all six WHO regions.

The Panel of Experts will provide input to help the WHO Collaborative Global Network Programme develop pilots that address the shared and specific challenges of people living with a rare disease around the world.

GlobalSkin Programs Director Tammi Shipowick and Board Treasurer Marc Yale (International Pemphigus & Pemphigoid Foundation (IPPF), will participate on this panel.

Read more about GlobalSkin's Collaborations
 
Events and Awareness Days

Due to the pandemic, GlobalSkin will not host any in-person events in 2021.  All offerings will be virtual.  

Upcoming Events

  • GlobalSkin / ILDS Co-hosted Webinar – "Lessons Learned about the Integrated Care Management of Skin Patients Through the Lens of Atopic Dermatitis", April 14, 2021
  • GlobalSkin- Europe Multi-stakeholder Roundtable, April 20, 2021  
  • GlobalSkin Virtual Conference 2021, June 3, 2021  

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 2021 Core Partners.
2021 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 180 patient association members ─ located in over 60 countries representing more than 65 disease areas ─ to reach more patients, and provide them with greater support, education, and advocacy.

GlobalSkin.org

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