On Sunday, I received an email from someone at the Global Genes Project, one of the leading rare and genetic disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare and genetic disease community.
They had chosen Anna’s story to be featured on their facebook page (which reaches over 22,000 people) and on their website. I was thrilled to see the post on facebook receive hundreds of “likes,” and dozens of shares and comments.
Here is a look at (and link to) the article on their website:
I’m grateful to the Global Genes Project’s efforts to support and raise awareness of rare conditions like XP.