GlobalSkin Newsletter - December 2019

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December 2019

Greetings from New IADPO Board President

It is with great pleasure that I write this letter as the new IADPO Board President. I am delighted to have the opportunity to serve alongside my Board colleagues and continue the work of IADPO with the support of committed and competent staff. In particular, I look forward to collaborating with the Executive Committee and full Board of Directors in providing advice and support to senior staff as they implement the new three-year strategic plan that was recently approved by IADPO’s membership.

New Board of Directors

Welcome to the 2019-2020 IADPO Board of Directors and Executive Committee. Our Board of Directors are patient leaders representing IADPO Member organizations, many of whom are skin patients themselves.

We thank all Board Directors for their dedication to this important role in our organization. Learn more about the IADPO Board of Directors here.

AGM & Strategic Plan

For IADPO Members who were not able to join us for the Annual General Meeting, held earlier this fall, view the recorded meeting here. During the AGM, Members were updated on IADPO’s 2018-2019 activities and were provided with a preview of 2020 initiatives.

We are pleased to announce that IADPO members approved a new three-year Strategic Plan. Learn more about IADPO’s Plan here.

IADPO's 2019 Year in Review

GlobalSkin’s focus on growing its membership and initiatives to support skin patient organizations has continued very successfully throughout 2019. Read our recently published Year in Review!

GlobalSkin at the 2019 EADV Congress

The European Academy of Dermatology and Venereology (EADV) Congress 2019 in Madrid was the fifth Congress that GlobalSkin Board Directors and senior staff have attended since our inception in 2015. GlobalSkin’s objective during the EADV Congress was to connect with key stakeholders and bring attention to the work we and our Member organizations undertake to improve the lives of patients living with dermatological conditions.

View the Flickr Albums and read the full article to learn about highlights from this year’s events.

Research Update: GRIDD

The Global Research on the Impact of Dermatological Diseases (GRIDD) project is progressing well. This ground-breaking patient-initiated research project, which will measure the true impact of skin diseases from the patient perspective, is currently in Phase 2, qualitative data gathering from patients. Exciting milestones were reached in 2019, including an oral poster presentation at the EADV in Madrid and manuscript submission of systematic literature review findings to a prominent dermatology journal.

Looking for more information on the GRIDD Project? You can now view the recorded plenary session from the GlobalSkin 2019 Conference on the GRIDD research project.

Members Only

e-Learning

Member representatives are invited to take part in unique e-Learning opportunities offered throughout the year. Login to the Members only area to view the recording from our latest sessions:

Grassroots Advocacy for Skin Disease — Getting There from Unaware

Global Research on the Impact of Dermatological Diseases (GRIDD): Why It Matters for GlobalSkin Members and Their Patients

2020 e-Learning Sessions

The 2020 e-Learning calendar will be posted in January. This will allow you to save the dates for all 2020 e-Learning sessions!

GlobalSkin Workplace – Connecting our Community

GlobalSkin Workplace is coming to all Members! We have created a unique online space where coffee chats can take place, resources can be shared, and GlobalSkin Members can continually connect with one another.

Watch for an email with instructions on how to claim your account in the coming weeks.

GS2019 Conference Videos

Still wondering what the GlobalSkin Conference is about? Learn why IADPO brought together over 100 patient leaders for our signature Conference event this past spring.

Highlight videos from #GlobalSkin19 are LIVE! Watch them here.

GlobalSkin 2021
Conference Planning

Planning for the GlobalSkin 2021 Conference will get underway in the new year. We are looking for volunteers to sit on the Conference Committee which will be chaired by Michelle Capon, IADPO Board Director.

If you are interested in taking part in this committee, please email Shona Fleming.

Communities Update

RareDERM Community

This past November, we were pleased to host the first meeting of the RareDERM Community Advisory Committee. Committee Members represent seven patient organizations and are in six different countries - providing a wonderful cross-section of viewpoints.

The first steps have been taken towards ratifying the three-year RareDERM Community Strategic Plan, and the group will meet again in early 2020.

Atopic Eczema Community

This fall, our new Atopic Eczema Community Advisory Committee met several times, including an in-person meeting in Madrid. This group is taking final steps to ratify the three-year Atopic Eczema Community Strategic Plan.

This past October, 16 members from our Atopic Eczema Community met in Madrid to attend a two day Advocacy Training Workshop. Attendees went home with new skills and a tailored advocacy plan for their patient organization.

World Atopic Eczema Day was a great success in 2019 with over 54 atopic eczema patient organizations receiving a new Communications Toolkit and World Atopic Eczema Day logo for use in their local campaigns. GlobalSkin offered a World Atopic Eczema Day Fund to help offset costs for marketing and event costs for our Members. Read about the Day in the 2019 recap report.

Upcoming Events

1st Global Congress on Epidermolysis Bullosa 2020 – January 19-23, 2020 (London, UK)

American Academy of Dermatology (AAD) Association Annual Meeting – March 20 – 22, 2020 (Denver, USA)

International Alliance of Patient Associations (IAPO) Global Patients Congress – April 16 – 18, 2020 (Edinburgh, Scotland)

International Symposium on Atopic Dermatitis (ISAD 2020) and HOME Meeting – April 21 – 24, 2020 (Seoul, South Korea)

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

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 160 patient association members ─ located in 50 countries representing more than 60 disease areas ─ to reach more patients, and provide them with greater support, education and advocacy.

GlobalSkin.org