November 11-15, 2023. Atlanta
Naevus Global participated in the PeDRA (Pediatric Dermatology Research Alliance) conference in Atlanta (USA) from November 9 – 11, 2023. The Executive Director Dr. Mike Siegel invited us. PeDRA paid part of our travel costs and we were able to participate for free in the conference of almost 400 participants from various countries.
What is PeDRA?
PeDRA, Pediatric Dermatology Research Alliance is a collaboration of physicians, researchers and patient representatives in the USA. PeDRA’s mission is to create, inspire and advance research to prevent, treat and cure childhood skin conditions.
Present were, among others:
- Nevus Outreach, Lauren Isbell (CEO), and Maggie Karr Mangold (board member)
- Global Skin, Jennifer Austen
- Other well-known patient organizations such as the Coalition of Skin Diseases
- Well-known doctors (CMN experts), Dr. Ilona Frieden, Dr. Carrie Coughlin, Dr. Elena Hawryluk
- CMTC-OVM, Lex van der Heijden
Booth for Naevus Global and CMTC-OVM
PeDRA also offered us the opportunity to have a stand in a perfect position: directly opposite the entrance to the plenary hall! We have developed, among other things, the parent support guide together with Naevus Global. Partly because of this, we were able to combine our stand.
Of course, we brought South Limburg chocolate and syrup waffles with us. The reactions were again of recognition and lots of fun!
Role patient organisations in PeDRA
During the plenary session ‘collaboration for the win’ panel discussion it became clear (again) how important PeDRA considers the input of patient organizations.
Below is a piece of text from Executive Director Dr. Mike Siegel.
The burden of pediatric skin diseases on patients, families, and healthcare systems is severe and underappreciated. Despite the high prevalence, association with systemic comorbidities, and impact on physical, social and psychological well-being, disease management options are limited and the pace of research in the field historically slow. To address this, the Pediatric Dermatology Research Alliance (PeDRA) was founded in 2012 as a collaborative research network to identify new ideas, facilitate multicenter studies, fund important research, and provide centralized infrastructure and education that advances research in the field at a meaningful pace. Entering its twelfth year in 2024, PeDRA’s mission is to create, inspire, and sustain research to prevent, treat, and cure childhood skin disease and PeDRA’s vision is of changing lives and healing children with skin disease through collaboration and discovery. PeDRA has more than 700 members, has given more than $2M USD to research grants and fellowships, supports collaborative research in eleven different focus areas, and has published more than 85 peer-reviewed manuscripts.
With the burden of disease far outpacing limitations on investigators’ time and resources, PeDRA recognized right away that patient priorities need to be at the core of everything it did. Patient partners needed to be standing by PeDRA’s side as strategic allies while also being seen as patients and research subjects in PeDRA members’ clinics. Patient advocacy partners provided critical funds to help get PeDRA off the ground in the early days and have had a seat at every PeDRA Annual Conference from the 1st PeDRA conference in Chicago in 2013 to the latest PeDRA conference in Atlanta in 2023. Along the way, PeDRA has done so much more to engage its patient allies including:
- Establishing a Patient Advisory Committee with a direct link to PeDRA’s collaborative research core and representation on the PeDRA Board of Directors.
- Forming a “Community Membership” category for any patient, parent, or advocate to stay close to PeDRA messaging and activities. Every year one patient stakeholder is recognized as the “Community Member of the Year”.
- Receiving two Engagement Awards from the Patient Centered Outcomes Research Institute (PCORI) to grow patient-engagement infrastructure (2019) and to drive multi-stakeholder education towards active research in the field of pediatric eczema (2021).
- Offering Travel Scholarships to patient stakeholders to attend the PeDRA Annual PeDRA Conference starting 2022 and launching a children’s camp for pediatric patients at its conference starting in 2020 in collaboration with the Children’s Skin Disease Foundation.
- Launching three collaborative “challenge grant” opportunities in collaboration with patient advocacy groups, focused on pediatric psoriasis, eczema, and alopecia areata.
Above all, PeDRA recognizes the critical role that patients, parents, and advocates play in the field of pediatric dermatology research and is always open to new ideas and new opportunities to strengthen their connection to the patient community. To learn more, visit www.pedraresearch.org or send us an email at email@example.com.
Camp Discovery is a children’s camp for children with a chronic skin condition. Camp Discovery is offered free of charge by PeDRA to families with a child with conditions ranging from eczema, vitiligo, and ichthyosis to congenital moles. The camp lasts a week and is very much appreciated. To participate, the dermatologist must complete a form to nominate a child. From NNN/Naevus Global I offered them the English version of the comic book ‘Tous en Piste’, ‘Let’s Go’. When children arrive, they often want to rest and read a book.
Nevus Outreach and PeDRA
The collaboration between Nevus Outreach and PeDRA is crucial for advancing research and policy for Congenital Melanocytic Nevi (CMN). Without data, informed decisions regarding CMN treatment are impossible. Together, they are establishing a registration (NOOR) for individuals with CMN in the USA, utilizing insights from the OCOMEN research. The registry will be a physician verified data set! This initiative ensures comprehensive understanding and better outcomes for those with CMN.