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March 2020
GlobalSkin and COVID-19 Travel Restrictions

Dear Members and Stakeholders,

As an organization focussed on the well-being and health of dermatology patients globally, the International Alliance of Dermatology Patient Organizations (GlobalSkin) has a responsibility to safeguard the health and safety of our member organization leaders, dermatology patients, Board Directors, employees, and other key stakeholders. 

In view of COVID-19’s worldwide impacts, the GlobalSkin Board of Directors approved a new travel guideline, which took effect earlier this week.
 
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What's New
New Global Albinism Alliance  

On January 26, 2020, persons with albinism from six regions of the world voted unanimously to form an official alliance on albinism! The vote is a first step to promote solidarity among albinism groups around the world. 

GlobalSkin CEO, Christine Janus, was proud to attend this historic event in Paris, France. Congratulations to all involved! 
Learn More about Albinism
Patient Associate Editors at the British Journal of Dermatology

Patient engagement or patient participation is an important issue. I believe the motto is: “Nothing about us without us.”

In his June 2019 editorial for the British Journal of Dermatology (BJD), Professor Alex Anstey gave an overview of patient engagement and how this could be incorporated at the BJD.Time for an update, and it is good news!
Read Article 
 
Members Only
Upcoming Members' e-Learning

Webinar:  Nothing about Us without Us - Patient Engagement and Research 
Presenter: Bernd Arents, Dutch Association for People with Atopic Eczema  
Date:  Thursday March 26, 2020 10:00 am EST (16:00 CET) 

Patient engagement in health research and health care delivery is essential. This webinar will cover the Why, Where and How of patient engagement.

Join us to learn and take away concrete ideas on how you can start or enhance your own pateint engagement strategies. 

Register Here
 
Join GlobalSkin Workplace

Members are reminded to activate their GlobalSkin Workplace account today! Invitation emails have been sent to the primary representative in each Member organization with a step-by-step guide for activating your Workplace account. 
 
Workplace is a unique member’s-only space where you can connect with other member organization leaders using Workplace Chat and HD video. Collaborate in existing GlobalSkin groups or create your own group; either way share experiences, encouragement and ideas! Save time and work - see if someone has already done what you are considering! Check out the mobile apps too!  
 
Still have questions about GlobalSkin Workplace? Read more here. (You must be logged into your Members account).  
 
If you are having trouble signing into your workplace account, contact Communities Manager Stephanie Miller. 
 
What do our Members need?
 

Members, we need your input! A key goal for GlobalSkin is to build a well-supported, highly-engaged and inclusive member community.  In order to do that, we need to hear from you to make sure that our existing and future programming supports you and your organization as you build success around your goals. 

We will therefore be contacting you for your feedback with a questionnaire that will be delivered to your inbox in the next two weeks.  We know that COVID-19 has turned our world a bit upside down, but still we ask and hope that every GlobalSkin Member takes the time to participate in the survey. With everyone’s input, we can design the best possible Membership Experience – now and in the future!
 
Member Communities
RareDERM

Thank you to the entire RareDERM Community for your contribution to the GlobalSkin RareDERM Community Strategic Plan. The creation of this three-year strategic plan was a collaborative effort, including input from the GlobalSkin RareDERM Forum in Milan and leadership by the RareDERM Community Advisory Committee and IADPO’s Executive Committee.

GlobalSkin is pleased to share with you the RareDERM Community Strategic Plan.
RareDERM Strategic Plan
Atopic Eczema

Community Mobilization Workshop – Rescheduled: IADPO had been planning a two-day capacity-building workshop for June 2020 in Dublin, Ireland. In view of the rapidly evolving situation around COVID-19, however, we are rescheduling this workshop to the fall.

Leaders from Atopic Eczema organizations from around the world will hopefully then gather for a more advanced Advocacy workshop. They will build on the work done in Madrid where they developed individual advocacy strategies for their organizations.
Atopic Eczema Strategic Plan

GlobalSkin is pleased to share our finalized Three-Year Atopic Eczema Community Strategic Plan.

This plan is the result of input from attendees at the Atopic Eczema Forum in June 2019, our Atopic Eczema Steering Committee throughout 2018-2019 and the Atopic Eczema Community Advisory Committee throughout the fall, the IADPO Executive Committee and the Atopic Eczema Community at large.

Take a look at the Strategic Plan here.
 
GRIDD Update

GlobalSkin is pleased to introduce Deirdre Laframboise as our new Research Director. Deirdre will be working actively to involve our patient organization members in the Global Research on the Impact of Dermatological Diseases (GRIDD) project. GRIDD will help every organization by proving a means to gather information easily to then use to show that your disease(s) matter to the press, to government, and to patients themselves.
Coming soon: GRIDD 101

What’s in it for you? Why get involved?

GlobalSkin staff and the GRIDD research team are creating a dynamic overview of the GRIDD project, which will cover each project phase and expected outcomes and show you why and how GRIDD can help your patients.

This presentation will be available to view on the GlobalSkin website in Spring 2020. Stay tuned!
GRIDD Webinar Series

How does it all work? How does it all fit together to give us a credible and believable voice for our patients? A GRIDD webinar series for Members is coming – designed based on your needs. This five-part series will cover all phases of the GRIDD project starting in late spring 2020.

Keep updated on all the webinars by visiting Members e-Learning. All webinars will be recorded and available for future viewing.
GRIDD Phase 2

We need more patient issues! The GRIDD workshop we conducted with patient leaders in June in Milan provided a wealth of issues which are being used to build the new PRIDD (Patient Reported Impact of Dermatological Disease) instrument. But, we discovered we need more information from some of the more common diseases (acne, alopecia, vitiligo, psoriasis, atopic eczema), and in certain geographical regions. So, we will add additional primary research that will involve patient interviews in Africa, Europe, Asia, South America and USA. This will take place over the next few months.

Interested in helping out? If you can connect us with patients for phone interviews, please contact Deirdre.Laframboise@globalskin.org.
 
Upcoming Events

World Health Day – April 7, 2020 
 
International Alliance of Patient Associations (IAPO) Global Patients Congress – Event postoned (Edinburgh, Scotland) 
 
Society for Investigative Dermatology (SID 2020) – May 13-16, 2020 (Scottsdale, Arizona) 
 
World Health Assembly – May 20 – 28, 2020 (Geneva, Switzerland) 

Do you have any upcoming events? Email Emma Montgomery with the details and we will add your event to our event listing page.

**Please note: Due to the fluid nature of the COVID-19 pandemic, upcoming events are subject to change.**
 

Thank you to our core partners.

The International Alliance of Dermatology Patient Organizations (IADPO - 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 162 patient association members ─ located in 51 countries representing more than 60 disease areas ─ to reach more patients, and provide them with greater support, education and advocacy.

GlobalSkin.org