EB Congress 2024

10/05/2024

Thank you to sponsors Debra International for their support throughout the .

We are proud to have such a diverse turnout with attendees and speakers from around the world, many of whom are new to the EB world. We hope you have left with new knowledge, new connections and even more motivation to tackle challenges faced by those with EB such as access to education, work, diagnosis, awareness, health management and access to care. Thank you.

DEBRA International is proud to have supported the 1st MENA Region and African International EB Congress held in Cairo, Egypt two weeks ago.

❤️‍🩹 The EB Congress 2024 saw 22 sessions over 4 days, and we heard 84 fantastic and educational presentations throughout the Congress, which focused on genodermatoses, advocacy in EB, and research and health care in EB, as well as panel sessions with experts in their fields discussing key issues regarding advocacy and access for rare disease patients.

🌏️ We were joined by 326 participants from 40 countries including Uganda, South Africa, Algeria, Jordan, Libya, UAE, Saudi Arabia, Qatar, Turkey, Uzbekistan, Tunisia and many more. These participants were made up of EB patients and their families, advocates, allied healthcare professionals, researchers, students, industry representatives, and Egyptian officials.

🫱🏾‍🫲🏼 Thank you to our local hosts, Hanaa El-Sadat of the Yasmin Foundation /DEBRA Egypt and Prof Ghada El-Kamah of the National Research Centre. Thank you to the 55 international and local speakers for sharing their valuable experiences, knowledge, and research. We would also like to thank all of the companies and organisations that sponsored and endorsed the Congress. And finally, thank you to all of the attendees for the high engagement with sessions, insightful discussions and creating such a collaborative atmosphere.

The highlighted the need for DEBRA's presence across the Middle East and Africa, and the DEBRA International team look forward to embarking upon this journey, continuing to drive progress and build upon the connections made.

Throughout the next couple of weeks, we will be releasing more in depth information reflecting upon the Congress so make sure to keep watching our social media channels for the full report.

Take a look at full statistics and figures from throughout today! 👉🏼👉🏽👉🏾

27/04/2024

Day 3 of the has kicked off with panel sessions from experts around the world who are discussing key issues in access and advocacy for rare disease patients.

Already today, we have several fantastic presentations on new topical therapeutic options, research updates and gene therapy information. And there's still more to come!

We have loved meeting all of our participants over the last couple of days, and look forward to welcoming even more of you on our final day. Make sure you don't miss out on our final panel sessions tomorrow focused on EB management, connecting the MENA region with rare disease initiatives and more. Debra International

26/04/2024

Welcome to day 2 of the ! Today focuses on advocacy in EB including networking sessions, achievements and challenges of DEBRAs in the MENA region and worldwide, as well as the priorities of patients.

We started this important day with an informative introduction from Debra International's president Ritu Jain, founder of Yasmin El Samra Foundation Hanaa El-Sadat and Ghada El-Kamah from the National Research Centre.

Join us throughout the day for fruitful discussions, to hear from patient advocates, hear about the latest research and learn how you can get involved.

22/04/2024

Make the most out of your visit to ! Here are our tips and tricks for visitors to the city to help you get around as comfortably as possible.

🚕Taxi: Download the app 'InDrive' for free to get around cheaply and safely in a taxi. It is similar to Uber, except cheaper. You do not need an Egyptian number to register. However, you must pay for your ride in cash. To book a wheelchair accessible taxi, please ask at your hotel reception where they will be able to arrange one for you. There will be free shuttle buses to and from the Congress venue.

🛜Internet: If you need internet whilst you are outside of the Congress venue, consider getting an Egyptian sim card as foreign use of data and phone calls is expensive. There is also not much WiFi available around Cairo, depending on where you are visiting. You can buy a sim card at the airport upon your arrival or via your hotel front desk. There is free WiFi available at the Congress venue.

🗺️Maps: If you are going offline and travelling with no internet, consider downloading the app 'Maps.Me', which allows you to download the map of Cairo and use it whilst you are not connected to internet, similar to Google or Apple maps.

👟👕Clothing: Whilst visiting some monuments outdoors, such as the pyramids, wear closed toe shoes as it is dusty and rocky terrain. The weather in Cairo is hot but the humidity is medium. Loose fitting, comfortable clothing is recommended. It is advised to dress conservatively as Egypt is a predominately Muslim country, covering your shoulders, chest and knees, however this is not necessary for or expected of tourists.

🚰 Water: Be sure to carry water with you whilst you are exploring the city, as it is dusty and to avoid dehydration. It is not advised to drink tap water in Cairo, but bottled water is available from the hotel for free.

🫱🏽‍🫲🏾 People may offer a friendly service whilst you are out and about, for example taking a photo of you or escorting you somewhere, where they may ask for a tip afterwards. If you feel you don't need assistance, a polite 'no thank you' should suffice.

Most of all, get out and enjoy the exciting city of with so much to see! Let us know if there are any more tips and tricks you have for visiting Cairo below 👇🏽 We look forward to welcoming you soon!

20/04/2024

We are so excited to welcome you to Cairo soon! One of our sponsors, Debra International, have started to arrive already and are scoping out the local area for all the best things for you to do whilst enjoying your stay in Cairo👇

18/04/2024

The DEBRA International Youth Council are thrilled to invite you to the DIYC Patient Seminar! Held online & in-person during the EB Congress in Egypt next week. Don’t worry if you can’t make it Cairo - you can join online! 🧑🏽‍💻

Sign up below👇️

We encourage you to please share this link with your communities and anyone who you think would like to attend. The session is open to anyone who is above the legal age in their country.

Time (Online): Part 1: 0900 - 1030 (GMT +2); Part 2: 1100 - 1230 (GMT +2)

“Our time together aims to foster collaboration, share knowledge, and empower patients within the EB community.”

https://docs.google.com/forms/d/e/1FAIpQLSfLIUv32O22OioVFf9hMELktr_qnjws5TmaWrRoGnXA_aO00w/viewform

16/04/2024

A travel update statement 🌍️✈️

We acknowledge the current conflict taking place between Egypt’s neighbours of Israel and Palestine, and understand that there is growing concern about travelling to Egypt given the recent attacks from Iran.

Advice from the Egyptian authorities, International SOS and many national government's state that travel to Cairo, Egypt can continue with standard security precautions. Cairo remains unaffected by the conflict, which shall allow the Congress to take place.

We are following events closely as they develop and will heed advice from the Egyptian authorities to provide updates where necessary. Please check your national government's website for the latest travel information.⁠
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Thank you for continuing to support the 1st MENA region and African EB Congress, we look forward to welcoming you soon.⁠

11/04/2024

🏅🥉 DEBRA Canada🏅⁠🥉
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We're thrilled to announce our latest sponsors, DEBRA Canada🙌 They are our next bronze sponsors for the 1st MENA and African International EB Congress 2024. ⁠
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DEBRA Canada are dedicated to providing support for families affected by Epidermolysis Bullosa (EB) and to increasing Canadians' awareness of this challenging disease. DEBRA Canada is the only organisational body in Canada exclusively committed to the care and support of families affected by EB and to improving their quality of life.
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Thank you DEBRA Canada for your sponsorship and dedication to people affected by EB🧬🫱🏻‍🫲🏼
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03/04/2024

🏅🥉 URGO Medical 🏅⁠🥉
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We're thrilled to announce our next sponsors, URGO Medical 🎉 They are one of our bronze sponsors for the 1st MENA and African International EB Congress 2024. ⁠
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Their mission, as a Healing Company, is to support healthcare professionals to heal people with evidence-based treatments and innovative services so that life can start again for patients.
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Thank you URGO Medical M-E for your sponsorship and dedication to people affected by rare diseases👐🏽🧬
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28/03/2024

🥈Krystal Biotech🥈

We're proud to announce our next sponsors, Krystal Biotech! They are our official silver sponsors for the 1st MENA and African International EB Congress 2024 🎉🎉🎉

Krystal’s mission is to develop and deliver genetic medicines to patients using redosable gene therapies for the treatment of severe, life‑threatening or rare diseases that have limited or no approved therapies. They are focused on the discovery, development and commercialization of genetic medicines for high unmet medical needs.

Thank you Krystal for your sponsorship and dedication to people affected by rare diseases 🧬🙌🏼

25/03/2024

For the first time, talented epidermolysis bullosa patients will be showcasing their artwork during the DEBRA Congress, held in Cairo, Egypt from April 25th to 28th 2024 at Semiramis Intercontinental Hotel. All those with EB are invited to submit their artwork to this exciting new exhibition for the EB community 🎨

We are aiming to raise awareness and support those with EB around the world and be part of their journey of resilience by helping them both physically and psychologically.

You can submit...
🖍️ Drawings
🧑🏻‍🎨 Crafts
✍Writings including poems, books and songs
🧵Decoupage art
🎨 Any other creative work

Please send a copy of your work as well as a short biography to Hanaa Elsadat [email protected] by April 15th 2024. Find out more on the EB Congress 2024 website:

For the first time, talented epidermolysis bullosa patients, who suffer from a rare skin disease with no discovered cure to date, will be showcasing their artwork during a DEBRA congress to be held in Cairo, Egypt from April 25th to 28th, 2024 at Semiramis Intercontinental Hotel. 

18/03/2024

🏅 Chiesi Global Rare Diseases 🏅

We're proud to announce that Chiesi Global Rare Diseases are our official platinum sponsors for the 1st MENA and African International EB Congress 2024.

Chiesi strive to create a world where it is common to have a therapy for all diseases and they act as a force for good, for society and the planet. A family-owned and run, Certified B Corporation committed to rare diseases, we are thrilled to have them on board the Congress team.

Thank you Chiesi for your sponsorship and dedication to people affected by rare diseases 👐🧬