1st MENA Region and African International EB Congress Report

1st MENA Region & African International EB Congress 2024 25th-28th April 2024

Cairo, Egypt

Organised by Yasmin El-Samra Foundation-DEBRA Egypt Endorsed by DEBRA International

Congress Report Prepared by DEBRA International

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The Congress presented an unprecedented opportunity to increase awareness of EB, build knowledge and understanding of the condition, and forge vital new connections in the region to further our collective mission to ensure that patients and their families are supported with the utmost care and attention the world over.

Ritu Jain, Singapore President of DEBRA International and DEBRA Singapore

”

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The Congress

Facts and Figures

Programme

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Day 1: Genodermatoses

Day 2: Advocacy in EB

Day 3: Research and health care in EB

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Day 4: Panel sessions

Patient Seminar

Networking Events

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EB Talent Exhibition

Travel Grant

Acknowledgments

CONTENTS

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THE CONGRESS

ABOUT The 1st MENA Region and African International EB Congress 2024 was held at the Semiramis InterContinental Hotel in Cairo, Egypt from Thursday 24th to Sunday 28th April 2024.

The event was hosted by Hanaa El-Sadat of the Yasmin El Samra Foundation-DEBRA Egypt, and organised by Ghada ElKamah and staff of the National Research Centre and Mohamed Yousry and staff of Transformers Display System & Events. The event was supported and endorsed by DEBRA International.

The Congress was co-chaired by Professors Mohamed ElDarouti and Ghada El-Kamah, and the Scientific Committee was co-chaired by Professors Peter Marinkovich and Ghada ElKamah.

OBJECTIVES It was the first EB Congress to be held on the African continent, which presented a unique opportunity in the MENA region and wider African continent to: engage and build a network of EB patients and their families, researchers and healthcare professionals spread awareness of EB and the work of DEBRA spark the development of fledgling DEBRA/EB patient advocacy groups

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FACTS AND countries represented

speakers

travel grants provided abstracts accepted

D FIGURES attendees

presentations given

artworks shown at the EB Talent Exhibition

PROGRAMME

The Congress comprised a 4-day programme, each day focusing on a specific topic:

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Genodermatoses

Advocacy in EB

Genodermatoses, the genetics of rare disorders, genomics, ethics, and biobanking research

Achievements and challenges of DEBRAs in the MENA region and worldwide, the priorities of patients

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4

EB research & health care

Panel sessions

Updates on basic & preclinical research, latest therapeutic developments, health care advances, and their significance for EB patients.

Experts in their fields discuss key issues regarding advocacy, diagnostics, and access for rare disease patients.

Day 1 also saw the DEBRA International Youth Council host a hybrid patient seminar exploring everyday life of living with EB.

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DAY 1 THURSDAY 25TH APRIL 2024

GENODERMATOSES Genodermatoses, the genetics of rare disorders, genomics, ethics, and biobanking research

The 1st African and MENA Region International EB Congress saw an impressive turnout of advocates, health care professionals, EB patients, their families and friends, students, and those in industry from around the world.

The opening session welcomed participants to Cairo with remarks from Congress Chairs Mohamed El-Darouti (Cairo University, Egypt) and Ghada El-Kamah (National Research Centre, Egypt) alongside the Genodermatoses day Chair Emad El-Gamal (Al-Azhar University, Egypt).

A powerful speech was given by Hanaa El-Sadat, Chairwoman of the Yasmin El-Samra Foundation-DEBRA Egypt about her daughter whom she lost to EB. She reminded the audience of the importance of congresses such as these and the real life impact raising awareness, research and improving care has, receiving a standing ovation from some of the audience.

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Opening remarks were heard from Ritu Jain (DEBRA International, Singapore) and by Egyptian MP for the House of Representatives Human Rights Committee, Amal Salama, who reiterated their care and commitment to those with EB. Research updates on genomics were given throughout the day, focusing on topics such as new systemic therapeutic options for the treatment of dystrophic EB; molecular profiling of some genodermatoses; clinical, molecular, and dental care; and more.

The afternoon sessions established Genodermatoses in Precision Medicine Era. There were excellent discussions about challenging cases and management with health care professionals and academics from all over Egypt.

The day concluded with an insightful look at the global perspective of genodermatoses, and a better life for EB patients involving a case study about perspective from the ethics of responsibility, summarising the importance of involvement of those with EB.

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DAY 2 FRIDAY 26TH APRIL 2024

ADVOCACY IN EB Networking sessions, achievements and challenges of DEBRAs in the MENA region and worldwide, the priorities of patients

The second day of the Congress welcomed advocates from around the world, and gave EB patients the opportunity to have their voices heard, and showcase their expertise in EB. This was the first conference with a dedicated advocacy day, and it was kickstarted with an engaging panel session about the patient researcher and the importance of partnering with patients at various stages of therapeutic development and access.

Participants got to hear presentations covering the importance of understanding the socio-economic burden of the disease, incorporating patient-reported outcome measures (PROMs) as proof of treatment efficacy, patient driven evidence generation for advocacy and more.

The following session saw representatives from DEBRA groups get together and discuss how the patient advocate is a vital player in healthcare, and how building on lived experiences can improve health outcomes from the perspective of different countries healthcare policies.

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The voice of EB patients was highlighted, along with how important it is for health care professionals to understand that EB patients are experts in their own condition. Participants had the opportunity to ask EB nurse Kal Begum (UK) clinical and practical questions about caring for EB, and how to engage their healthcare professionals to the fullest.

The panel session about increasing the reach of DEBRA and awareness of EB worldwide covered best practices and challenges of patient advocacy organisations (PAOs) – asking what can we learn from each other? We heard from DEBRA representatives from Australia, Brasil, Canada and Norway explaining how each group approaches their unique challenges, along with suggestions and solutions from one another to learn from.

Forming a patient advocacy group - how to go about it and what makes one successful are common questions which were addressed by the panel in the next panel discussion. The audience got to ask practical questions about how to get involved in their own countries and become more involved in advocacy. The importance of understanding cultural differences was highlighted by DEBRA Pakistan representative Faiza Ambreen, along with the importance of genetic testing in countries that have higher rates of consanguineous marriage.

The final session got the whole room to their feet and engaged by splitting the audience into four groups to discuss what they deem to be the top priorities to improve patient care. Each group was comprised of health care professionals, advocates,

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patients, families, friends, students and industry representatives globally. Networking ensued enthusiastically, and the groups presented their top 5 priorities to the rest of the room, after which the topics were voted on by all involved.

After 3 rounds of bustling discussions and votes, the top overall 5 priorities were chosen as: better access to basic medical supplies in rural areas learn from patients early intervention education programs for health care professionals faster and accurate diagnosis The advocacy day was a significant and successful educational opportunity for the HCPs and researchers in the room to understand the importance of the patient voice and their expertise.

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DAY 3 SATURDAY 27TH APRIL 2024

EB RESEARCH & HEALTH CARE The latest updates on basic and preclinical research, and therapeutic developments, and what these really mean for EB patients

The third day of the Congress was all about research and health care in EB. We started the day with a general overview and update in EB research continuing with novel therapeutic approaches for EB used worldwide to end up with the local experience of the Egyptian team of topical treatments for EB. The second session of the day was a compiled of five oral presentations selected from the submitted abstracts, ranging from the exciting topics of cancer markers to gene therapy and microbial infections in EB wounds.

After lunch, we shifted gears towards EB health care. We heard inspiring talks about EB care 101, EB Clinet and how to manage complex EB cases in a resource-limiting setting. We finalized the day with two motivating speeches showing us that an holistic approach is necessary and needed to properly care about our EB patients, independently of the available resources.

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DAY 4 SUNDAY 28TH APRIL 2024

PANEL SESSIONS Experts in their fields discuss key issues regarding advocacy and access for rare disease patients

The final day of the Congress commenced with an international panel session about how various initiatives can be consolidated towards positive healthcare outcomes for those with rare disorders. The panellists joined audience members in seats at the front of the room to facilitate a lively and productive open discussion forum.

Throughout the day, Congress participants heard from esteemed voices from Egypt, South Africa, Tunisia, India and more areas in the MENA region. The second panel session focused on the patient journey and care approaches that meet the needs of patients and physicians from the views of those who live in countries from the MENA region.

The Congress concluded with a group photo, poster prizes and closing remarks from Congress co-organisers Mohamed ElDarouti and Ghada El-Kamah with great reception and thanks.

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“

The reverberations of impact from this meeting will be felt over many countries, contexts and in individual lives. I am so grateful to everyone I learnt from in these four days.

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Shirlene Badger Illumina

PATIENT SEMINAR

The recent Patient Seminar hosted by the DEBRA International Youth Council (DIYC) at the DEBRA Congress in Egypt this April was a remarkable hybrid event, bringing together around 40 members from countries including Egypt, Sudan, Jeddah, Canada, India, Singapore, Italy, Spain, and South Africa. The seminar, structured into two engaging sessions, focused on how individuals manage everyday life while living with epidermolysis bullosa (EB).

The first session explored hobbies, passions, and personal care routines with speakers sharing inspiring stories and adaptive strategies for pursuing interests despite the challenges of EB. The second session highlighted the integration of sports and physical activities featuring adaptive sports programmes and practical tips from those who have successfully incorporated physical activity into their routines.

To ensure inclusivity, live translations were provided on screen, overcoming language barriers and enhancing communication among the diverse audience. Enlightening talks by Youth Council members offered valuable perspectives and were complemented by interactive games adding a fun and engaging element to the event.

Overall, the seminar was both informative and enjoyable, leaving participants inspired and better equipped to navigate life with EB, while fostering a supportive and interactive community atmosphere.

Mehar Singh Co-Founder & Leader of the DIYC 19.

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I have never felt such a sense of belonging and understanding and care in my life and it is an experience I will treasure for a lifetime. I feel like I have gained a global EB family and have made friendships that will last a lifetime. I also learned about resources I was not yet aware of and am now involved with different professionals who attended the conference as we work together for a more hopeful future and more comprehensive care for people with EB around the world.

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Racquel Russo, USA DEBRA International Youth Council Treasurer

NETWORKING EVENTS

The Congress also consisted of a number of additional events during the evenings prior to the start of the Congress and after the main programme sessions. These events are always a welcome and crucial opportunity for delegates to network and forge essential connections for ongoing communication and collaboration.

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Welcome Reception

Gala Dinner

The Welcome Reception was held on Wednesday 24th April and was an opportunity for delegates to (re)connect before the start of the main event.

The Gala Dinner was held on Friday 26th April affording another ample opportunity for delegates to interact.

Speaker certificates were also presented.

3 DEBRA Egypt Charity Fundraiser On Saturday 27th April, DEBRA Egypt hosted a Charity Fundraiser at the Grand Egyptian Museum (GEM) attended by Congress delegates, donors, and a number of esteemed guests.

The Fundraiser was under the patronage of the Minister of Solidarity, Nevine el-Kabbaj and featured the Cairo Opera String Quartet.

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Welcome Reception

Gala Dinner

Charity Fundraiser

“

The congress not only provided valuable knowledge and insights but also fostered a sense of community and collaboration among attendees. It was inspiring to connect with professionals and advocates dedicated to improving EB care globally.

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Faiza Ambreen President of DEBRA Pakistan

EB TALENT EXHIBITION

For the first time at an international EB Congress, people with EB were invited to submit artwork to showcase their talent as part of an exhibition during the Congress.

Submissions were open to anyone with any type of EB worldwide and could include any type of artistic work including: drawings and paintings crafts written and spoken word decoupage dance Art therapy is essential to improving the mental, emotional, and psychological well-being of those who suffer from a condition like EB. Therapy of this type allows people to express themselves, elevate mood, improve problem-solving abilities, and opens minds to new ideas empowering them to continue fighting for their lives.

The aim of the exhibition was to raise awareness and support of those with EB around the world and to be part of their journey of resilience by helping them both physically and psychologically draw a smile on their faces.

The Congress was delighted to receive artwork from 14 people of all ages living with EB from 10 countries. All artwork was available to view throughout the duration of the Congress.

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“

Alone, we can do so little. Together, we can do so much and change the lives of EB fighters.

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Hanaa El-Sadat Congress Organiser Founder of Yasmin El-Samra Foundation

TRAVEL GRANT

To support attendance at the Congress, DEBRA International invited applications for travel grants from member groups of DEBRA International as well as from people living with or advocating for people with EB currently residing in Africa or in the Middle East.

The grant could be used for: the basic registration fee for the Congress travel equivalent to the most economic fare budget accommodation Out of 23 applications received, DEBRA International was delighted to have been able to support 21 applicants to the tune of €21,000.

Successful applicants came from a range of countries including Algeria, Argentina, Australia, Belgium, Brazil, Croatia, India, Jordan, Qatar, Saudi Arabia, South Africa, Tunisia, UAE, Uganda, and the USA.

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“

Anyone with EB should attend a Congress... The way other people look at the same thing but with a different approach can help you solve a lot of issues of yours. For me, personally, I got to know more about so many things and it was an awesome experience.

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Anonymous Grant recipient

ACKNOWLEDGEMENTS

SPONSORS

ENDORSERS

Platinum: Chiesi Global Rare Diseases Gold: DEBRA International Silver: Krystal Biotech Bronze: URGO Medical, DEBRA Canada Friend: Rheacell, Julphar, Mölnlyke Health Care, Elegant Care, Beena

National Research Centre, Human Genetics and Genome Research Institute (HGGRI), African Society of Human Genetics, Yasmin El Samra FoundationDEBRA Egypt, DEBRA International, International Dermoscopy Society (IDS), The Academy of Scientific Research and Technology (ASRT).

SPEAKERS & CHAIRS Adel Botros Zaghloul, Adel Hussein Amr, Ahmed Sadek, Albert Mellick, Alexandra Heumber Perry, Amira Eid, Andreas Miller, Andy South, Anica Ježić, Antoinette Château, Amal Salama, Carol Hlela, Dedee Murrell, Dimitra Kiritsi, Elena Belonogova, Emad El-Gamal, Eman Kamel, Eman Rabie, Emeline Baillargeault, Faiza Ambreen, Galal El-Anany, Ghada Abd El-Badea, Ghada El-Hoseiny, Ghada El-Kamah, Hadeer Ibrahim, Hagar El-Sayed, Hamza Abd El-Raouf, Hanaa El-Sadat, Hanan Hosny Afifi, Hanan Saleh, Heba Ahmad, Heba Gamal El Din, Hesham Zaher, Hisham Fayek, Hoda Yousry, Huda Rasheed, Hussein El-Sabagh, Ignacia Fuentes, Inas Sayed, Imtishan Rafiq, Ira Jain, Julia Carnaz Benincasa, Kalsoom Begum, Khadija Sellami, Khalda Amr, Khalid Al Aboud, Khaled Helmi El-Wakeel, Khaled Gaber, Lamia Mohsen, Liliana Virginia Ziade, Maha Abdelfattah, Maha Nasr, Mahmoud Bahgat, Medhat El-Mofty, Megan Foster Flaherty, Mehar Singh, Mohamed Abdel-Kader, Mohammad El-Darouti, Mohammad El-Komi, Mohamad Nagy, Mona Essawy, Mona Farag, Mona Mostafa Korany, Mostafa El-Awady, Mostafa Ibrahim, Nabeelah Peerbhai, Nesrine Gomaa, Niraj Parajuli, Noha Zakareya, Nourhan Tahoun, Olga Orlova, Olivia Mullins, Pertunia Mutheiwana, Priscila Matsumoto Martin, Racquel Russo, Rahul Mahajan, Rasha ElBarbary, Reham Doss, Ritu Jain, Ryan Hultman, Safaa Saker-Delye, Sahar El-Sayed, Samia Esmat, Sarah Elshakankiry, Shaden Abdel Hadi, Shaheer Bardissi, Sherif Kamal, Shirlene Badger, Sophie Kitzmüller, Sophie Strobl, Tarek El-Badry, Toni Roberts, Vlasta Zmazek, Yahia Zakaria Gad, Zbigniew Ruszczak, Zlatko Kopecki, Zlatko Orucevic

ORGANISERS Amira Abulfotooh, Emad El-Gamal, Ghada El-Kamah, Gilda Quintero, Hagar El-Sayed, Hanaa El-Sadat, Heba Ahmed, Heba Anis, Hoda Yousry, Nehal Hassib, Nesrin Gomaa, Noha Tawfik, Megan Foster Flaherty, Mohamed Badei, Mohamed Yousry, Mona Korany, Olivia Mullins, Peter Marinkovich, Rana Mahrous, Rasha El-Barbary, Rasha El-Hossini, Reham Doss, Ritu Jain, Ruthie Winblad, Ryan Hultman, all members of the onsite Congress team

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We would like to thank everyone who made the 1st MENA Region and African International EB Congress 2024 possible.

Download a copy of the report for free from the DEBRA International website or by clicking here.