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DEBRA International Youth Council

Updated: Mar 7

Introducing the DEBRA International Youth Council



Their Vision is to create a sense of community among youth around the world living with Epidermolysis Bullosa. They are committed to fostering an environment where patients can feel represented, valued, planned for, considered and seen. Their Mission is to achieve this by providing a safe and supportive platform for youth to engage on, organized topics to discuss and explore together and the opportunity to meet and connect in-person. Come join their first online hangout!



Meet The Team

Get to know the heart and soul of our charity – meet our incredible Youth Council! Our team comprises 9 dynamic leaders hailing from various corners of the globe. We take pride in our diversity, uniting in a shared passion to make a positive impact. What makes us truly special is our ability to connect with you in multiple languages. Whether it's Afrikaans, Bahasa (Malay), Brazilian Portuguese, Norwegian, English, German, Hindi, Sign Language, or Spanish – we've got you covered!


Emily Boros - Rausch

CANADA | DDEB

Emily Boros-Rausch is an artist, advocate and mother that lives in Canada and has DDEB. She has a bachelors of Design and her thesis focused on the EB community. She works as the Creative Director for MiaThrives and is also a lifelong DEBRA Canada member. Emily is passionate about sharing her experiences with pregnancy, PGD IVF and motherhood with others to provide information and support to others in similar situations.



Toni Roberts

SOUTH AFRICA | JEB

After many years of connecting and supporting patients, Toni co-founded DEBRA South Africa. She uses her B.Psych Hons degrees and experience as a Life Line lay counselor to come alongside patients in a practical way, while also offering emotional support. Toni travels locally and internationally, focussing on advocacy, awareness, guidelines, and patient voices.





Mehar Singh

INDIA | RDEB

Mehar Singh is a 16-year-old high school student hailing from India. His passion lies in the thrilling realm of drones and robots, where he not only navigates these high-tech devices, but also indulges in fascination for building and making things. Beyond the

technical aspects, he takes pride in being a proficient public speaker, adding a communicative dimension to his diverse skill set.




Lena Riedl

AUSTRIA | RDEB

Lena comes from a corporate communication background with public relations and fundraising experience. She lives in Austria and works for DEBRA as a patient advocate and patient representative on the board. She wants to contribute to the Youth Council by sharing her experience with living with EB, when it comes to accepting and not hiding it, studying & working, and with all the other challenges life throws at you.



Ira Jain

SINGAPORE | EBS

Ira is a management consultant in Financial Services Advisory who lives with EB Simplex in Singapore. She has been a founding member of DEBRA Singapore since its inception in 2015. As a current executive committee member, her responsibilities include grant management, event organization, and publicity & communications. She graduated with a degree in Chemistry in 2021, and is passionate about scientific research, sustainability, and making a difference.



Racquel Russo

USA | JEB

Racquel earned her degree in Fine Arts and music composition, with a minor focus in Early Childhood Education. She eventually went on to receive an advanced degree in Accounting. She now works as a tax accountant in the US, beginning to specialize in

NPOs. EB permitting, she loves to dance, travel and swim. She is dedicated to empowering marginalized communities and is excited to blend her experience living with JEB with her passion for community organization and connecting with young people.


Ida Steinlein

NORWAY | RDEB

Former gallerist, interior designer and graphic designer. Ida has a passion for using her own experiences to help and educate as a speaker and lecturer has been her main focus in recent years. She lives in Norway, is a wife, mother and has RDEB. As her parents co-founded DEBRA Norway in the early 90s, DEBRA has always been a part of her life - and now she is the leader. With her involvement nationally and internationally, she hopes to make a positive contribution to the Youth Council.


Rodrigo Sousa

BRAZIL | RDEB

Rodrigo is 33 years old and has RDEB. He has a degree in advertising from UNIFACS, lives in Brazil and owns a Pet Shop Truck. A DEBRA Brasil volunteer since 2020, he now holds the position of Director. A lover of creativity, color and design, he hopes to spread knowledge about EB around the world, reducing prejudice. His hobbies are gaming, reading and watching animated movies.




Paulina Verdugo

CHILE | RDEB

Paulina Verdugo is a 24-year-old, passionate about scientific research, and an amateur nature photographer. She was born in a central city in Chile. Since her childhood, she has been interested in health sciences. Currently, she is in her penultimate year of the Nutrition and Dietetics program. Throughout her academic journey, she has focused on gaining a deeper understanding of the significance of nutrition for patients with EB.



Contact Information

Upcoming Events

Friday 22 March: The Youth Council will be hosting their first online hang out with all their new members. Here you'll have the chance to meet face-to-face (virtually) and get to know each other better!


Thursday 25 April: The Youth Council will be hosting a seminar at the  EB Congress in Egypt! If you are in Egypt they would love to have you attend in person, if not they are hosting it as a hybrid event online meeting too.


They'll share times & login details for both events soon, so stay tuned!




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