World Congress Rare Skin Disorders 2022

June 6-8, 2022
From June 8 to June 9, 2022, the first international congress for rare skin conditions took place in Paris. This event was intended for doctors, researchers, and patient representatives. The input from patient organizations is increasingly recognized as crucial. To enhance medical care, a collaboration among doctors, researchers, pharmaceutical companies, and the patient’s voice (patient representatives) is necessary. Naevus Global actively participated in the congress.

A booth for promotion

We raised awareness about congenital nevi by distributing brochures and promotional materials. Our booth was the most visited! We engaged in many interesting conversations and connected with new doctors. Nearly all the brochures we had with us were handed out, primarily to dermatologists.

De brochures die wij hebben uitgedeeld zijn de drie ouderhulpgidsen. Ook het boekje over de ‘patient journey for CMN syndrome’ wilden artsen graag hebben. Het boekje hoort bij de poster en gaat over verschillende fases waar je mee te maken kan krijgen (diagnose, behandeling/verwijdertraject, complicaties, dagelijks leven of palliatieve behandeling). In het boekje staan persoonlijke verhalen. Het is waardevol voor medici – om het verhaal van zorg te kunnen lezen zoals de zorg beleefd wordt. De poster hing erbij.

Opening forum

The congress started with a discussion on the importance of patient representation in diagnosis, treatment, and access to medical care (‘building global innovative collaboration for improved quality of life’). In the photo from left to right: Prof. Dr. Eli Sprecher, Head of the Dermatology Department at Tel Aviv, Brownlyn Lewis (Boehringer Ingelheim, Head Global Patient Engagement), Antoine Gliksohn (patient representative Global Albinism Alliance in France), Rachel Patterson (researcher at Cardiff University, GRIDD project Global Skin), Durhane Wong-Rieger, board member of RDI (Rare Diseases International).

A selection of some scientific presentations

Prof. Dr. Christine Bodemer (conference organizer and ERN-skin, Hôpital Necker-Enfants Malades, Paris, France) delivered a presentation on the necessity for improved recognition of rare skin conditions and what is required for this.
Dr. Pierre Vabrès (University Hospital, Dijon, France) presented his research on the treatment of genetic mutations in congenital nevi.
Prof. Dr. Veronica Kinsler gave two presentations. One focused on treatment and research into the cause of the genetic mutation in congenital nevi. The second presentation concerned café-au-lait spots; why and how they need to be studied. Café-au-lait spots can also be associated with congenital nevi.

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