1st MENA Region and African International EB Congress
DEBRA Canada was Proud to be a Bronze Sponsor!
The 1st MENA Region and African International EB Congress
The 1st MENA region and African International EB Congress was recently held in Cairo, Egypt. The Congress was broadly attended by participants from more than 30 countries including Uganda, South Africa, Algeria, Jordan, Libya, UAE, Saudi Arabia, Qatar, Turkey, Sudan, Uzbekistan, and Pakistan among others across the globe.
Organizer Professor Ghada El-Kamah with Friends.
DEBRA International played a pivotal role in the support and organization of the Congress with valued sponsors including Chiesi Group, Urgo Medical, and Krystal Biotech. Our amazing hosts Hanaa El-Sadat of the Yasmin Al-Samra Foundation, DEBRA Egypt, DEBRA International, and Ghada El-Kamah shared their vision and hope that the awareness and spotlight could impact the paths of many lives in the EB community, medical community, along with government partnership alliances.
In our first post-event organizational review, Hanaa exclaimed she was able to procure medical coverage for those suffering from EB in Egypt from their governmental regulators who were present during this Congress. This is a huge achievement, as bandage scarcity, and the persistent education for EB specific wound care needs is an on-going battle within our health care systems that the EB community faces internationally (including here in Canada).
Organizer Hanaa El-Sadat and Kibirige family.
Hanaa was also able to find help for a Ugandan family that traveled to Cairo to gather knowledge on battling EB, and will find new support within Uganda through Rotary International.
DEBRA Canada was proud to be a Bronze sponsor, while providing further support with travel grants for North African attendees planning to initiate their own DEBRA national groups.
DEBRA Canada also provided financial support for the newly founded DEBRA International Youth Council which has quickly achieved global outreach in bringing youth together from every corner of the world. This was clear by the end of their day one hybrid meeting which included live translation from Spanish speakers halfway across the globe and engaged topics by the youth, for the youth, living with EB.
DEBRA Canada’s support of these initiatives is due to the reality that many new member families are refugees and immigrants from the MENA region. DEBRA Canada recognizes effective support for rare diseases is best served by being global in nature. Often, we hear of isolation and poor regional awareness regardless of town, city, province, or country. It was gratifying to see this impact being made in real time for those who attended.
Hanaa with speaker/researcher Dr. Albert Mellick and Hultman family.
The Congress was very collaborative with opportunities to engage with almost every speaker in question periods. During these enhanced sessions, we were able to dive deeper into many of the presentations and give great value to attendees. In collaboration with the DI Youth Council and participating members from the DEBRA International Executive Committee, we did an interesting workshop session to find out what were the top 5 priorities for EB care for those present. We broke into 4 groups of 12-20 people each. In three phases of presentations and two voting sessions, we whittled down approximately 20 priorities into these top five:
#1 - Better access to basic medical supplies in rural areas.
#2 - Learn from patients.
#3 - Early intervention.
#4 - Education programs for healthcare professionals.
#5 - Faster and accurate diagnosis.
Thank you Global Skin Alliance https://globalskin.org/conference/conference-23 and Toronto Sick Kids’ Geonodermatosis Network Meeting https://www.canadianskin.ca/component/content/article/225-english/news-and-events/events/1017-genodermatoses-network-meeting for setting the seed to highlight the importance of engaging attendees to find common ground and to work collectively. It was exciting to watch and interact with the various groups as they hashed out their differences and wills for what is most important to patients, caregivers, and clinicians alike.
DEBRA Canada will look to continue to support these types of international initiatives to enhance the sharing of knowledge and access to the wealth of knowledge from our international DEBRA partners.
It was a pleasure to represent DEBRA Canada while involving my daughters as a family Internationally. We hope to continue to provide momentum for the MENA regions and others who attended by honoring Canadian Patient Ambassador Jonathan Pitre’s memory and his wish on a global scale… “A wave gets bigger and bigger. I want to make sure that…. When I leave, that wave is big enough to keep going on its own.”
Closing day group photo
Sincerely,
Ryan Hultman
Vice President, DEBRA Canada.
Executive Committee Member, DEBRA International.
