The congress attracted 200 participants. This diverse group consisted of 142 patient representatives from 124 organizations spanning 53 countries, along with speakers, sponsors, and stakeholders. Throughout the four days, our focus was on what it means to elevate ourselves – as patient representatives, as a community, and for the organizations we represent. Additionally, we advocated for improved treatment and care for individuals with skin diseases or conditions. For more details, refer to the report provided by Global Skin. Below is a summary of the highlights for NNN.

An opening panel at Global Skin Elevate 2023 discussed the role of patient representatives. It explored effective communication with stakeholders such as medical professionals, policymakers, and the pharmaceutical industry. Data is crucial for articulating your viewpoints clearly. Without data, you remain invisible, unable to draw attention and lacking access to resources. In cases where data might be lacking, a “patient journey” approach can be employed. The GRIDD project organized by Global Skin is therefore essential for gathering data.

What determines the success of a collaboration? It requires having a shared interest, common goals, being independent yet interdependent, agreement on leadership and decision-making processes, openness and transparency in operations, trust, and respect for diverse opinions.

How can Global Skin establish a successful collaboration with organizations for rare skin conditions? In the workshop focused on rare skin conditions within Global Skin, participants sought the most effective and valuable ways in which rare-DERM could contribute to our patient organizations. This was organized by Kathy Redmond. To achieve this, in-depth discussions took place at roundtables, with different themes assigned to each table. Every fifteen minutes, participants rotated to a different table. Various topics were discussed at these tables, including how to find volunteers, organize fundraising, utilize communication tools, influence the health policy agenda, contribute to therapy development, and effectively connect with other organizations. From the main points of all table discussions, participants had the opportunity to vote on determining the most effective and valuable ways in which rare-DERM could provide support for their organizations.

Throughout the conference, Visual Harvesting captured discussions and presentations by creating on-the-spot visual representations. Below is the visual depiction of the discussion led by Chris Bundy on mental well-being:

Impact and reach are highly valued by funds. During Global Skin Elevate 2023, it was explained how to measure these aspects. Impact primarily involves the responses from members, such as: ‘thanks to this activity, I feel well and can enjoy life better.’ Metrics like website visits and social media reach provide insights into the process. An enlightening workshop.

The GRIDD study is a patient-led research initiative designed to collect global data on what it’s like to live with a skin condition. Rachael Patterson spent 6 years working with patients as a PhD candidate to develop a comprehensive question set (PRIDD). Starting from June 5, 2023, this can be filled out in the GRIDD survey. The outcomes (data!) can be used by Global Skin to advocate with policymakers and dermatologists. Patient organizations can also utilize the data. The survey is open for completion by any adult with a skin condition until September 27, 2023. NNN is actively involved in the GRIDD project. Learn more…

Every organization could share materials in the ‘village’. NNN placed the book from Caring Matters Now, ‘How do you C me Now,‘ for attendees to peruse. It attracted a lot of visitors! Next to it were the brochures that NNN had available.

At the closing dinner of Global Skin Elevate 2023, elevator awards were presented. A ‘Global Skin Innovator Award’ was awarded to Naevus Global, and it was received by Marjolein van Kessel!

The innovator award was given to Naevus Global for successfully completing the following initiatives:

• Booklets to support families dealing with visible rare skin conditions, particularly congenital nevi. These booklets, from Caring Matters Now, are parent guides for patient support, made available in 6 languages (English, Dutch, French, Italian, Portuguese, German, and Spanish) thanks to Naevus Global.
• A booklet featuring patient journey experience stories.
• Additionally, a psychotherapeutic children’s comic book (Anna’s Tips and Tricks) will soon be available in four languages to educate children with visible skin conditions! This project showcased creative and innovative thinking by using a comic book as an art form to educate children. The extensive awareness campaign targeted not only children but also adults and will be available in five different languages (English, German, Spanish, Dutch, and French – the original). This initiative isn’t confined to a single therapeutic area but spans across multiple.

Naevus Global comes together online a few times a year to collaborate on joint projects. The Global Skin Innovator award has been used for these projects.