Global Genes has released a new toolkit on How to Promote Your Rare Disease Story Through Social Media.
Most rare diseases are not well understood and often there is no cure or treatment. This means that people affected by a rare condition have to learn about living with their condition as they go along. Telling your story can be a powerful tool for sharing with others, who may still be searching for a diagnosis, symptoms, or treatment options. It is also an excellent way to raise awareness for your condition.