The second Pediatric WM Round took place yesterday, September 9th, and we had the great the pleasure to welcome a special guest and new partner to our Network: Riham Badawy, CEO and co-founder of ALD Hope.
Here is a brief summary of what Riham Badawy told us:
"My name is Riham Badawy, and I am the co-founder of ALD Hope, as well as a mother of three boys, two of whom live with X-linked Adrenoleukodystrophy (ALD) and adrenal insufficiency. Our family’s journey through years of misdiagnosis, culminating in the discovery of this rare genetic condition, led us to create ALD Hope to transform our pain into purpose.
ALD Hope supports families worldwide by providing educational resources, care packages, and advocacy for early detection and newborn screening. We developed a comprehensive Parent Guide for ALD and adrenal insufficiency, distributed medical alert tools, and created awareness campaigns like #ProudToBeRare. We also stand by patients and caregivers through global support initiatives, including fundraising campaigns that helped an ALD boy access a life-saving bone marrow transplant.
Internationally, ALD Hope is a proud member of the International Adrenal Consortium, collaborating with organizations worldwide to translate their resources into Arabic and share knowledge with underserved communities. Our vision is that every newborn is screened, every family is supported, and no one has to walk this journey alone."
You can find more information about ALD Hope at the sources below:
Website: www.aldhope.org
Email: info@aldhope.org
Social Media: @ALDHope (Facebook | Instagram | LinkedIn | X/Twitter)
The WM Rounds Network is determined to keep establishing partnerships with patients' associations and organizations to work synergystically towards advancing research and improving care.
Thank you, Ms Badawy for joining the WM Rounds Network!
