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by Pediatric Dermatology Research Alliance
The Pediatric Dermatology Research Alliance (PeDRA) is vibrant research network pursuing the mission to create, inspire, and sustain research to prevent, treat, and cure childhood skin disease.
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On this episode of PeDRA Pearls, PeDRA's Executive Director, Mike Siegel, PhD joins host, Jenn Dawson for a recap of the 2026 PeDRA Annual Conference. Together, they explore how record attendance, shared resources, and stronger patient partnerships are energizing pediatric dermatology research. From inspiring research presentations to Dash for Discovery and Mini Camp Wonder, they celebrate the connections that make this community special. Tune in to hear how PeDRA is carrying that momentum forward to advance research focused on outcomes that matter most to patients.Learn more about the upcoming Pathways to Progress Summit. This episode is presented by Palvella Therapeutics. Although Palvella Therapeutics provided funding for this PeDRA Pearls Podcast, the contents of the podcast were developed independently by PeDRA. Learn more about Palvella Therapeutics.
In this episode, clinicians and a parent advocate explore what EB research and clinical trials mean for patients and families. Pediatric dermatologist Lara Wine Lee, MD, PhD, and Deana Calhoun, whose daughter Cooper lives with recessive dystrophic epidermolysis bullosa (RDEB), discuss the research pipeline, treatment studies, placebo-controlled trials, eligibility, informed consent and assent, and the practical realities of participation. Their conversation highlights the importance of clear communication, patient-centered trial design, and including children and families in decisions about research and care.For a complete list of guest disclosures, please click here.Special thanks to BioMendics, Castle Creek Biosciences, Chiesi, and Krystal Biotech for their support of the 2026 EB Educational Series. PeDRA is solely responsible for all program content and the selection of all presenters, authors, moderators, and faculty.
In honor of EB Awareness Week, we're bringing you the second episode in our Research In Action: Advancing Care for Epidermolysis Bullosa series. Jean Tang, MD, PhD, joins Marissa Perman, MD, and Irene Lara-Corrales, MD, MSc, to discuss the rapidly evolving treatment and research landscape for epidermolysis bullosa (EB). Together, they explore newly approved therapies, emerging approaches like gene therapy and CRISPR, the realities of clinical trial participation, and the ongoing challenges of access and daily care. The conversation offers a thoughtful balance of practical guidance, scientific progress, and hope for the future of EB treatment.For a complete list of guest disclosures, please click here.Special thanks to BioMendics, Castle Creek Biosciences, Chiesi, and Krystal Biotech for their support of the 2026 EB Educational Series. PeDRA is solely responsible for all program content and the selection of all presenters, authors, moderators, and faculty.
In today's episode, Denise Metry, MD, shares how mentors, patients, and unexpected opportunities shaped her career and commitment to PHACE and LUMBAR syndrome research. She discusses the power of multidisciplinary collaboration, patient-guided priorities, and the upcoming 2027 PHACE Syndrome Community research and family meeting. She also reflects on transforming personal loss into purpose through her 2025 Boston Marathon fundraiser, which raised $40,000 for future research.This episode is presented by Palvella Therapeutics. Although Palvella Therapeutics provided funding for this PeDRA Pearls Podcast, the contents of the podcast were developed independently by PeDRA. Learn more about Palvella Therapeutics.
In this episode, Guin and her mother, Jill Salas, join PHACE Syndrome Community program manager Moureen Wenik to share a powerful story of diagnosis, resilience, and advocacy. They reflect on Guin's journey from complex medical challenges in infancy to becoming a college athlete and aspiring health care professional. The conversation also explores the vital role of family support, patient communities, research, and self-advocacy in helping people with PHACE Syndrome find answers and shape better care. Their message is clear: lived experience can drive meaningful change, and no family has to navigate a rare condition alone.This episode is presented by Palvella Therapeutics. Although Palvella Therapeutics provided funding for this PeDRA Pearls Podcast, the contents of the podcast were developed independently by PeDRA. Learn more about Palvella Therapeutics.
Pediatric dermatologist Cheryl Bayart, MD, joins PeDRA Pearls to discuss the mentors, patients, and collaborators who shaped her path from clinician to researcher and fellowship leader. She shares the story behind her PeDRA-supported project to develop expert guidance for laser treatment of port-wine capillary malformations in infants, reflects on lessons learned from families living with rare skin conditions, and explains how thoughtful, child-centered procedural care can create better healthcare experiences for life.This episode is presented by Palvella Therapeutics. Although Palvella Therapeutics provided funding for this PeDRA Pearls Podcast, the contents of the podcast were developed independently by PeDRA. Learn more about Palvella Therapeutics.
In this episode of PeDRA Pearls, host Jenn Dawson talks with Ilka Netravali, MD, about insights from the National Alopecia Areata Foundation’s annual conference. Dr. Netravali explores emerging treatments for pediatric alopecia areata, the research questions that matter most to patients and families, and the importance of individualized care. Dr. Netravali also discusses the powerful role of community in helping children and caregivers feel supported and connected. The conversation highlights a central message: meaningful care means treating the child and family, not just the alopecia.For patient and caregiver resources, please visit www.naaf.org. This episode is presented by Palvella Therapeutics. Although Palvella Therapeutics provided funding for this PeDRA Pearls Podcast, the contents of the podcast were developed independently by PeDRA. Learn more about Palvella Therapeutics.
In this episode of PeDRA Pearls, Deepti Gupta, MD, joins Jenn Dawson to discuss how patient meetings advance care and research for congenital melanocytic nevi (CMN). Reflecting on the Nevus Outreach Conference, Dr. Gupta highlights how collaboration among families, clinicians, researchers, and advocates can amplify patient voices, inspire new research questions, and improve education for rare disease communities. Dr. Gupta brings a unique perspective to this work as both a clinician-researcher in the field and a mother of a child living with CNM, providing valuable insight into both the scientific and lived experiences of this conditionThis episode is presented by Disc Medicine. Although Disc Medicine provided funding for this PeDRA Pearls Podcast, the contents of the podcast were developed independently by PeDRA. Learn more about Disc Medicine.
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The Pediatric Dermatology Research Alliance (PeDRA) is vibrant research network pursuing the mission to create, inspire, and sustain research to prevent, treat, and cure childhood skin disease.
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