The inaugural EB World Congress allowed members of the international EB Community – researchers, clinicians, advocacy groups, and patients – to come together to discuss the future of EB. Whilst much focus was on research and clinical care, another question often posed amongst these groups is “how can someone [without a medical background] get involved and make a difference in the EB Community?”.
The following is a story of how one mother’s journey caring for her daughter living with EB inspired her to create an EB organisation in Egypt:
Yasmin (Cairo, Egypt) was born with Recessive Dystrophic EB and the youngest of four children in her family. Hanaa ElSadat, Yasmin’s mother, made sure that Yasmin lived a full life and one as normal as possible. Yasmin was fluent in three languages – Arabic, English, and German – and became one of the youngest artists in Egypt, even creating three drawing exhibitions at the ages of 9, 11, and 13. All proceeds from these exhibitions were donated to the less fortunate and to EB children in need at the Kasr Al Aini Governmental Hospital.
After Yasmin passed away, Hanaa felt she should carry on her daughter’s mission; in 2014, Hanaa established the Yasmin Elsamra Charity Foundation. The Foundation has cared for more than 120 patients (from counties like Egypt, Jordan, Saudi Arabia, Yemen, and Syria) and helps educate parents on how to care for children born with EB. They offer wound care products, pain relief, nutritional, and psychological support as well as group outings, drawing, and music lessons.
Having attended the Congress, Hanaa returned to Egypt reenergised with hope for a better future for people living with EB. Hanaa is an inspiration, and we are happy to hear about the initiative she has taken after her own experience with her daughter.
Not everyone has the resources to start a non-profit organisation but helping existing organisations based on your own strengths can be an excellent starting point. Volunteers are always in demand at non-profit organisations – from organising events and securing donations, to providing professional services such as accounting, finance, marketing, or translation.
Please contact your local EB organisation to get involved or contact the EB Without Borders team if you are interested in helping where there is no established EB organisation.