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OCTOBER 2018

PRESIDENT'S MESSAGE

Dear Members & Stakeholders,

With the arrival of autumn, GlobalSkin reaches another milestone by celebrating its third anniversary! Congratulations to our Members, Board of Directors, CEO and staff, who have all contributed to our success to date. Our membership now stands at 93 patient organizations from 36 countries, representing over 37 skin conditions. We continue to invite Patient Organizations to join our movement  – Membership is free! Spread the word amongst your networks and encourage fellow patient organizations to get involved with building our GlobalSkin movement.

Read More

 

IADPO CONNECTIONS IN EUROPE

 

GlobalSkin at the EADV

IADPO Board Members Jean-Marie Meurant, David McMahon and Cheryl Talent, CEO Christine Janus, and staff attended the European Academy of Dermatology and Venereology (EADV) Congress in Paris last month.  This was our busiest EADV Congress yet where significant strides were made as the dermatology community has gotten to know IADPO and sees our organization and members as the professionals we are.

Read more and view our Skin Matters Reception photos and our co-hosted scientific session photos

GlobalSkin in Brussels 

In September, GlobalSkin CEO Christine Janus and Executive Director Jennifer Austin, along with our lead researcher Prof. Dr. Matthias Augustin, attended a Seminar on Patient Perspectives hosted by the Permanent Representation of Denmark to the European Union, which took place in Brussels, Belgium.

This multi-stakeholder event explored the diverse perspectives on current challenges related to the use of patient reported outcomes in the area of non-communicable diseases; and reflected on potential new initiatives for incorporating patient perspectives in future healthcare policies. IADPO’s presentation focused on the GRIDD research project and how it will contribute the patient perspective to decision making.

        

GLOBALSKIN 2019 CONFERENCE

 

 

 

June 7-9, 2019 in Milan, Italy 

Mark your calendars! The GlobalSkin 2019 Conference will take place on June 7-9th, 2019 in Milan, Italy. Thank you to IADPO Members for your input on our Learning Objectives Survey.

The GlobalSkin 2019 Steering Committee (Cheryl Talent, Sandra Webb, Helen Crawford, Michelle Sibbons, Olesya Mishina, Jorge Luis Perez and Emanuele Regalini) and staff are working hard to develop a Conference Program that will inspire and offer opportunities to learn and share based on your feedback. We look forward to bringing together skin patient leaders and advocates from around the globe.

A call for speakers is coming this fall and Conference Registration will open by the end of the year. Financial aid will be available for IADPO Members to attend the Conference. Not a Member of IADPO yet? Apply for Membership for your organization today and benefit from being part of our global community which includes: webinars, bi-annual conferences, key connections with other leaders of patient organizations.  

Thank you to our 2019 Conference partners.

   
    
         

          

MEMBERS ONLY - WHAT'S NEW

 

IADPO Annual General Meeting

On October 1, 2018, GlobalSkin held its Annual General Meeting where Members were updated on accomplishments over the past year and provided an overview of IADPO initiatives and activities in 2018 and beyond.

For those who missed it - view the recorded AGM here.

Board of Directors Election

Thank you to all IADPO members who voted in our 2018 election to elect two new Board Directors. We saw members from all regions of the world vote in this election. Special thanks to the nominees who put their names forward to provide us with such a diverse slate of member candidates – both in terms of geography and disease area.  Read More

                     

Julius Muungano                  Simmie Smith 

 

Members E-Learning

The next GlobalSkin E-Learning Session for members will be next month:

Power of Patient-led Research
with IADPO CEO Christine Janus

Taking place the Week of November 19, 2018—look for your upcoming opportunity to vote on the best times via Doodle.

Visit our website for the full 2018 Schedule and links to past recordings of E-Learning sessions.

 

 

Community Building

European Region

GlobalSkin hosted a European Patient Organizations Community meeting on September 15, 2018, in Paris bringing together patient leaders from Europe to discuss challenges and opportunities currently faced in this region. As 40% of IADPO's current Members are located in Europe, the objective of this meeting was to have an open discussion about where opportunities exist to improve advocacy for skin patients in Europe.  Read More

Atopic Eczema

IADPO has been actively working this year to establish a community of patient organizations for atopic eczema patients worldwide. Projects have included the launch of AltogetherEczema.org , World Atopic Eczema Day and release of a co-sponsored report on atopic dermatitis with the Economist Intelligence Unit. The lessons we are learning from this community building will be very helpful as we begin to build more disease- and region-specific communities. Read more.

RareDERM - Mark your Calendars!

IADPO will host a rare dermatological diseases event in Milan, Italy in June 2019, prior to the GlobalSkin 2019 Conference. The RareDERM Forum will be geared towards patient leaders and patient organizations who support skin patients suffering with rare dermatological diseases and conditions around the world. IADPO will work with a steering committee as we plan and develop this 1.5-day forum.

We are currently looking for volunteers to participate in this steering committee. Please contact Shona Fleming if you are interested in taking part in organizing this first of its kind event. Read more.

RESEARCH UPDATE

 

 

GRIDD

The Global Research on the Impact of Dermatological Diseases (GRIDD) project is nearing the completion of Phase One, with the Research Team from the University of Hamburg and Cardiff University finalizing the systematic literature review. We have marked a significant public milestone, with the publication of the review protocol, which can be read here.

IADPO convened a meeting of the GRIDD Stakeholder Advisory Committee during the recent EADV Congress in Paris, with representatives from confirmed and prospective funding partners....

Read More

We gratefully acknowledge the support of our
Healthcare Industry Partners for the GRIDD project.

UPCOMING EVENTS

 

Contact us to have your global conference listed here.

 

2018 Core Misson Partners

NEXT ISSUE

  • Reports/position papers from EADV work
  • GlobalSkin 2019 Conference registration details
  • GRIDD
 
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