One of the main goals when I signed on board with Global Genes was to give a platform to the many voices of knowledgeable and weathered patients, parents and advocates in the rare and genetic disease community. I wanted to be able to have writers share real stories, tips, and advice. I’m so happy to say that after a little recruiting and a lot of effort and thought on behalf of our new (and growing) team of bloggers–we’ve been able to share some extraordinary stories.
- Stephanie Larder shares her story about life with CVID (Combined Varied Immune Deficiency) in “But you Don’t Look Sick.”
- Genie James talks about how holistic care might take a new role in rare disease treatment in “Holistic Help for Rare Disease?”
- Alyssa Zeigler discusses how to tell friends about your rare disease in “A Piece of Me.”
More importantly–if YOU believe you might have some advice/tips o stories you’d like to share with the readers at Global Genes–what are you waiting for? Tell me about it.