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DEBRA International Youth Council

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DEBRA International Youth Council

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Creating a safe and supportive platform for youth and young adults living with Epidermolysis Bullosa around the world! https://linktr.ee/debrayouthcouncil

22/09/2026

𝗜 𝗵𝗮𝘃𝗲 𝗮 𝗱𝗿𝗲𝗮𝗺, 𝗯𝘂𝘁 𝗘𝗕 𝗴𝗲𝘁𝘀 𝗶𝗻 𝘁𝗵𝗲 𝘄𝗮𝘆. 𝗪𝗵𝗮𝘁 𝗱𝗼 𝗜 𝗱𝗼 𝗻𝗼𝘄?

Sometimes our dreams don’t disappear — 𝙗𝙪𝙩 𝙩𝙝𝙚 𝙥𝙖𝙩𝙝 𝙩𝙤𝙬𝙖𝙧𝙙𝙨 𝙩𝙝𝙚𝙢 𝙘𝙝𝙖𝙣𝙜𝙚𝙨.

Join us for an open conversation about dreams, limitations, possibilities, and finding different ways forward while living with EB.

No perfect answers. No expectations. Just an honest space to share, listen and connect with others who understand.

📅 𝟯𝟬 𝗦𝗲𝗽𝘁𝗲𝗺𝗯𝗲𝗿
🕐 𝟭𝟮–𝟮 𝗣𝗠 𝗨𝗧𝗖
💻 𝗢𝗻𝗹𝗶𝗻𝗲 𝘃𝗶𝗮 𝗭𝗼𝗼𝗺

We’d love to have you with us. 💛

RareDiseaseCommunity

02/08/2026

Have you ever stopped to think about what you want more of in your life? 💛

During the Day 2 pool party at the DEBRA Care Conference, our Find Your Feelings booth invited participants to do just that.

Visitors explored our emotion cards, picked up meaningful bookmarks, and created their own intention bottles.

Using herbs like lavender, lemongrass, and others—each carrying its own symbolic meaning—they filled their bottles with the things they wanted to welcome into their lives: joy, love, peace, strength, health, hope, and so much more.

Sometimes, the smallest moments create the biggest impact. ✨

If you could create your own intention bottle, what would you fill it with? 🌿
Let us know in the comments.

Thanks to for making this amazing video 🤍📸

06/07/2026

Flashback to an incredible weekend at the DEBRA Ireland Family Weekend! 💙
Youth Council leaders Toni, Ida and Lena were invited to speak about the DIYC, encouraging more young people to get involved and highlighting what young people living with EB are capable of.
We shared our lived experiences—from building relationships and pursuing careers to self-acceptance and finding love. It was an honour to connect with families, inspire the next generation, and show the power of young voices.

13/03/2026

We are so proud of our Youth Council member James 🇲🇾✨ From Malaysia to the runway, he absolutely owned it at the Lancôme show. Watching him walk with such confidence and grace was a full-circle moment. The future is bright, and he’s just getting started. 🌟

12/03/2026

𝗜𝘀 𝗽𝗹𝗲𝗮𝘀𝘂𝗿𝗲 𝗮 𝗯𝗮𝗿𝗿𝗶𝗲𝗿 𝗳𝗼𝗿 𝗽𝗲𝗼𝗽𝗹𝗲 𝗹𝗶𝘃𝗶𝗻𝗴 𝘄𝗶𝘁𝗵 𝗘𝗕?

For many generations, sexuality and intimacy in the context of Epidermolysis Bullosa (EB) have remained a taboo topic.

But 𝗶𝗻𝘁𝗶𝗺𝗮𝗰𝘆, 𝗰𝗼𝗻𝗻𝗲𝗰𝘁𝗶𝗼𝗻, 𝗮𝗻𝗱 𝗽𝗹𝗲𝗮𝘀𝘂𝗿𝗲 are part of human life — and people living with EB deserve 𝗼𝗽𝗲𝗻 𝗰𝗼𝗻𝘃𝗲𝗿𝘀𝗮𝘁𝗶𝗼𝗻𝘀 𝗮𝗻𝗱 𝗿𝗲𝗹𝗶𝗮𝗯𝗹𝗲 𝗶𝗻𝗳𝗼𝗿𝗺𝗮𝘁𝗶𝗼𝗻.

The campaign “𝙄𝙣𝙩𝙞𝙢𝙖𝙘𝙮 𝙈𝙖𝙩𝙩𝙚𝙧𝙨 – 𝘼 𝙂𝙪𝙞𝙙𝙚 𝙩𝙤 𝙎𝙚𝙭𝙪𝙖𝙡𝙞𝙩𝙮 𝙬𝙞𝙩𝙝 𝙀𝙥𝙞𝙙𝙚𝙧𝙢𝙤𝙡𝙮𝙨𝙞𝙨 𝘽𝙪𝙡𝙡𝙤𝙨𝙖” was created to help break this silence and provide patient-centered guidance for the EB community.

📖 The guideline is currently available in 𝗘𝗻𝗴𝗹𝗶𝘀𝗵, 𝗦𝗽𝗮𝗻𝗶𝘀𝗵, 𝗜𝘁𝗮𝗹𝗶𝗮𝗻, 𝗙𝗿𝗲𝗻𝗰𝗵, 𝗮𝗻𝗱 𝗚𝗲𝗿𝗺𝗮𝗻, and can be found in the EB Patient Guides section on the Debra International website.

Because talking about sexuality is also about body image, self-confidence, and feeling comfortable in your own skin.

💬 𝙃𝙤𝙬 𝙘𝙖𝙣 𝙀𝘽 𝙨𝙝𝙖𝙥𝙚 𝙩𝙝𝙚 𝙬𝙖𝙮 𝙨𝙤𝙢𝙚𝙤𝙣𝙚 𝙨𝙚𝙚𝙨 𝙩𝙝𝙚𝙞𝙧 𝙗𝙤𝙙𝙮, 𝙞𝙣𝙩𝙞𝙢𝙖𝙘𝙮, 𝙖𝙣𝙙 𝙨𝙚𝙡𝙛-𝙘𝙤𝙣𝙛𝙞𝙙𝙚𝙣𝙘𝙚?

25/12/2025

Happy Holidays from the DIYC✨
We’re grateful for another year of community, friendship, and strong EB advocacy—and excited for all that’s ahead.

22/11/2025

Meet Andreas, 32, from Berlin — living with junctional EB and making a powerful impact in the EB community. 💜
His journey with DEBRA Germany began as a patient and volunteer, later becoming Vice Chairman in 2021. Since May this year, he’s taken on the role of Managing Director of DEBRA Germany. He also contributes his voice and experience as a member of the DI Youth Council.
With a background in social sciences, Andreas is passionate about creating meaningful connections and real outcomes for people living with EB. He’s excited to join the DEBRA International Executive Committee, where he’ll help shape initiatives that truly reflect the needs of our community.
In his free time, you’ll find him reading, traveling, and spending time with his poodle, Alto. 🐩✨

28/10/2025

🌍💜 Inside Out for EB Awareness Week!

Delegates from around the world attending the World Skin Summit in Cape Town joined together to turn their jackets inside out — in support of the Inside Out Campaign for Epidermolysis Bullosa (EB) Awareness Week, 25–31 October.

Wearing your clothes inside out shines a light on the daily reality of those of us living with EB, often wearing our clothing this way to avoid painful seams against our fragile skin.

This simple act reminds us that EB is more than a skin condition — it affects life from the inside out. 💜

Join the movement, share your Inside Out moment, and help raise awareness and support for those living with EB.

Adresse

Berlin

Website

http://www.debra-international.org/, https://docs.google.com/forms/d/e/1FAIpQLSdelbbzAi8CuV51Ql6fV_3avT_bQotPEMTw_8z2R1z

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