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HD in the News: EHDN March Newsletter

In the recent EHDN Newsletter, Factor-H work is featured in two articles – the first launches the 2024 Gratitude Day campaign; the second is by Alex Fisher, who tells her story of coming to Venezuela and the work she is conducting together with Factor-H & Habitat LUZ in Maracaibo to launch a comprehensive caregiver program focused on people living in conditions of extreme vulnerability. Her narrative is powerful, poignant and filled with passion. Alex came with interest and curiosity and left a changed person- both personally and professionally. She quickly earned the love, respect, and trust, difficult to obtain from these families, through her kindness, compassion and sincerity. Please read her story and reach out if you want to join her cause to bring relief to caregivers in Venezuela.

Charles Sabine TEDx talk

Further down in the EHDN newsletter you can see a description of Charles Sabine talk for TEDx, about HD, his personal family experience with the disease, and his activism to improve the lives and care of HD families worldwide. In this personal presentation, Charles speaks about his brother’s loss to HD, his own diagnosis, his work as a foreign war correspondent, his activism via the Hidden No More Foundation, meeting Pope Francis in 2017, and his participation in clinical research and therapeutic trials.

This is an important talk by clearly one of the most charismatic and important HD advocates in the world.

Please watch his talk below and share widely within and outside the HD community!

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