We are looking for rare and genetic disease patient advocates to submit their stories of hope and inspiration to the Global Genes Project website. We will publish these stories on our blog to help raise awareness for your specific rare diseases. Submit your story.
Many of the people living with rare diseases and disorders didn’t even know these diseases existed until they (or a family member) were diagnosed. Families are struggling to understand the problems that impact their loved ones because doctors, nurses and the public are under educated or misinformed about rare diseases. We have a lot of educating to do!
By highlighting your story, our hope is to continue to raise awareness of rare and genetic diseases and strengthen the voice of patients and advocacy groups.
Learn more about how you can get involved and begin to take action against rare and genetic diseases!