Genespoir
On June 12, 2021, Genespoir, a patient organization advocating for people living with albinism in France, hosted its annual conference. Originally planned to be an in-person event, Genespoir managed to pivot quickly to a virtual platform.
Their program was filled to the brim with a welcome session for new members, a presentation on albinism worldwide, and a summary of 15 years of albinism research by a partner geneticist. Along with these presentations, there were many opportunities for group discussions among patients, and exciting youth-friendly activities as well.
Although it was Genespoir’s first-ever virtual conference, there were no technical difficulties throughout the entirety of the day.
Thanks to their Annual Conference being held online, one of their members who live on the Réunion Island (French island located next to Madagascar) could attend the conference for the first time!
Patient experience quotes:
“Thank you for all this more than enriching information. I finally had answers concerning my daughter's eyesight! She is already 3 1/2 years old. Thanks to you, we have made further progress!”
"Thank you for such a warm welcome to the newcomers! And for the effort of providing a rich program and varied. Looking forward to accessing the replays."
Learn more about this organization by visiting their website:
https://www.genespoir.org/page/1518766-accueil
Follow them on Facebook: https://www.facebook.com/genespoir.albinismes
