PeDRA Pearls

Bella Plumptre, MD is in her final year of dermatology residency at the University of Massachusetts. Hailing from England, Dr. Plumptre found her passion for pediatric dermatology while doing a pediatric dermatology rotation in London, where she “she found her people.” Cut to a few years later, she began studying in the US and sees herself in the academic setting in the future. Learn more about Dr. Plumptre’s research interests and global adventures, including her love of tandem biking all over the world.

Pachyonychia Congenita is a rare and extremely painful dermatologic disease. For many patients, a clear diagnosis isn’t even made until adulthood. PC Project aims to change that with a patient registry and free genetic testing. Patients and families come to PC Project for support from a community that knows and understands them, but also to advance the science. Due to the success of the international registry, data provided by patients is fueling research at an accelerated pace. You can learn more about PC Project and ways to get involved by visiting www.pachyonychia.org.

Pachyonychia Congenita is a rare and extremely painful dermatologic disease. For many patients, a clear diagnosis isn’t even made until adulthood. PC Project aims to change that with a patient registry and free genetic testing. Patients and families come to PC Project for support from a community that knows and understands them, but also to advance the science. Due to the success of the international registry, data provided by patients is fueling research at an accelerated pace. Hit play to learn about PC Project through a special interview with Janice Schwartz, PC Project’s Executive Director. You can learn more about PC Project and ways to get involved by visiting www.pachyonychia.org.

Hidradenitis Suppurativa (HS) is a devastating inflammatory skin disease that is painful, stigmatizing, and under-researched in the pediatric population. PeDRA is shining a light on this often-overlooked disease with HS Connect, a patient advocacy organization committed to promoting research and providing resources to everyone in the HS community. HS Connect offers virtual support groups, works with the medical research community, and promotes HS education and awareness all in the name of fueling research that will lead to better outcomes for those suffering from HS.

Hidradenitis Suppurativa (HS) is a devastating inflammatory skin disease that is painful, stigmatizing, and under-researched in the pediatric population. PeDRA is shining a light on this often-overlooked disease with HS Connect, a patient advocacy organization committed to promoting research and providing resources to everyone in the HS community. HS Connect offers virtual support groups, works with the medical research community, and promotes HS education and awareness all in the name of fueling research that will lead to better outcomes for those suffering from HS.

This is a rerelease interview from October 2021 with the National Eczema Association. Eczema’s range in severity means each patient experience is different from the next and no two stories are the same. Young Ella has lived with severe eczema since she was 8 months old. Now, as a 6-year-old in first grade, she’s finally able to experience some relief and feel like a “normal” kid. Ella and her mom, Amy share their story, how the National Eczema Association helped them navigate this disease, and how Ella was finally able to eat ice cream and go to the beach.National Eczema Association

In October 2021, PeDRA highlighted the National Eczema Association. This incredible organization supports patients, families, and caregivers, through a variety of activities and resources. NEA also supports research through a robust funding program, as well as its own research through surveys and the EczemaWise app. NEA’s Vice President of Scientific and Clinical Affairs, Wendy Smith-Begolka, MBS discusses the research taking place now and how future research will impact patients, families, and caregivers. www.nationaleczema.org

Part two of our community spotlight tells the story of a shy young woman struggling with atopic dermatitis and her journey to self-confidence through her experiences at Camp Wonder as both a camper and then a counselor. Mikaela, along with her mother Diana discuss how life-changing Camp Wonder has been for them both. Learn all about the Leap of Faith tower, and see firsthand how Camp Wonder changes lives.

Children with skin diseases don’t get to experience childhood in the same way as children without skin diseases. In this Community Spotlight, we sit down with Francesca Tenconi, the founder and executive director of the Children’s Skin Disease Foundation to talk about their program Camp Wonder! Camp Wonder is a place where children get to be kids, without the burden of their disease taking center stage. Camp Wonder’s unique approach allows children to put their childhood first and gives their parents and siblings a much-needed rest from doctor’s appointments, sleepless nights, and all the other burdens that come with skin disease. Learn more about CSDF here. This episode originally aired in February 2022.

Episode Three: Dr. Ramien moderates a discussion between the two opposing sides to highlight the research still needed to come to a consensus, while also shedding light on active research in this area. The Drugs and Bugs Focused Study Group presents a spirited conversation on whether Reactive Infectious Mucocutaneous Eruption (RIME) should be a separate condition from Stevens-Johnson Syndrome (SJS). Moderated by Dr. Michele Ramien, Dr. Erin Mathes, and Dr. Yvonne Chiu debate RIME, SJS, and other blistering severe cutaneous adverse reactions.

Episode Two: The Case for Stevens-Johnson Syndrome (SJS)Dr. Yvonne Chiu discusses the confusion it can create when RIME is called out as a separate condition from SJS. The Drugs and Bugs Focused Study Group presents a spirited conversation on whether Reactive Infectious Mucocutaneous Eruption (RIME) should be a separate condition from Stevens-Johnson Syndrome (SJS). Moderated by Dr. Michele Ramien, Dr. Erin Mathes, and Dr. Yvonne Chiu debate RIME, SJS, and other blistering severe cutaneous adverse reactions.

Episode One: The Case for RIMEDr. Erin Mathes discusses her clinical approach to RIME patients and highlights the reasons for keeping RIME as its own, independent condition. The Drugs and Bugs Focused Study Group presents a spirited conversation on whether Reactive Infectious Mucocutaneous Eruption (RIME) should be a separate condition from Stevens-Johnson Syndrome (SJS). Moderated by Dr. Michele Ramien, Dr. Erin Mathes, and Dr. Yvonne Chiu debate RIME, SJS, and other blistering severe cutaneous adverse reactions.

Yakir Levin, MD, PhD is a Physician Scientist and Dermatologist at Massachusetts General Hospital, Instructor in Dermatology at Harvard Medical School, and an Investigator at the Wellman Center for Photomedicine. Watch to learn more about Dr. Levin’s interest in both medicine and electrical engineering and how he takes an interdisciplinary approach to bring the best possible care to his patients and their families.

PeDRA's Associate Director of Educational Programs had a chance to meet with several ISID attendees to get their take on the amazing science being presented at the inaugural International Societies for Investigative Dermatology meeting in Tokyo, Japan this last month. If you'd like to watch the video versions of these interviews, please click here.

Listen as PeDRA's Associate Director of Educational Programs, Jenn Dawson interviews several poster presenters at the ISID meeting in May 2023 in Tokyo, Japan. The interviews include a reference to an EB/Squamous Cell Carcinoma clinical trial. You can find more information about that trial here. You can also view the on-camera interviews referenced in this episode here.

Cathryn Sibbald, MD, MSc is a dermatologist at the Hospital for Sick Children (SickKids) in Toronto, Canada. In addition to treating children, Dr. Sibbald also treats adults in community hospitals, providing her with the unique opportunity to continue caring for many patients that she treated as children. She is the co-chair of PeDRA’s Hair Disorders Focused Study Group and serves on both the PeDRA Grants and PeDRA Outcomes Committees. Listen now to learn more about Dr. Sibbald’s work, how she originally wanted to be a pharmacist before pursuing dermatology, and how she became a pet-parent during the pandemic.

Learn about maximizing relationships between attendings and trainees. Dawn Eichenfield, MD, PhD, Cheryl Bayart, MD, and A. Yasmine Kirkorian, MD along with their trainees share their wisdom in this round table discussion about creating a research relationship that’s mutually beneficial for both attendings and trainees.

This webinar offers presentations from Nanette Silverberg, MD, and Adelaide Hebert, MD to discuss the renewed interest in understanding the pathophysiology of molluscum and the importance of treatment versus a “watch and wait” strategy. Implications on patient quality of life and burden of illness are also discussed as well as managing difficult molluscum cases. Emerging therapeutic strategies are also reviewed.This program is sponsored by Novan. Click here to view the presentation slides.

Irene Lara-Corrales, MD is an associate professor of dermatology at the University of Toronto and a pediatric dermatologist at The Hospital for Sick Children (SickKids) in Toronto, Canada. She always knew she wanted to be a pediatric dermatologist, and her interest in epidermolysis bullosa (EB) grew deeper after treating a young baby with EB during her residency in Costa Rica. Most recently, she’s been championing Hidradenitis Suppurativa within PeDRA and the greater pediatric dermatology research community. Watch or listen to learn more about her passions, including her love of books and tea.

Listen to Dr. Harper Price and Dr. Lee Zane discuss Dr. Zane's unique experience in academic research as well as pharma. Dr. Zane shares his insights on everything from the keys to designing a good clinical trial to forming research questions that are valuable to achieving both clinical and industry regulatory goals.

Maria Teresa García-Romero, MD, MPH is an attending physician and assistant professor at the National Institute of Pediatrics in Mexico. She currently serves on PeDRA’s Grants Committee and is a former member of the Early Investigator Committee. Her research interests include morphea, vascular anomalies, EB, and more. Listen to hear about her multi-country research collaborations and advice for international clinician scientists.

Dr. Jennifer Schoch presents her recent collaborative study on Skin Microbiome Sampling in the Preterm Neonate.