Faced with a rare autoimmune disease? Where do you go for help?

Our monthly webinar last week featured Daniel DeFabio and Mary Morlino from Global Genes, a 501(c)(3) non-profit organization that provides resources like this toolkit to help patients advocating for a rare disease.

Another resource that Global Genes provides is a closed discussion group on Facebook called Global Genes RARE Disease Community for patient advocates and caregivers. This community is great for engaging with other advocates, asking questions, and receiving support from others. Another way to begin one's rare disease journey is through the Rare Compassion Program. In this international educational program, rare disease patients are paired with a medical student to help raise awareness about rare diseases in hopes of building the next generation of future healthcare providers ask key advocates for rare disease patients.

To watch the full webinar on the programs Global Genes offers, click here. Please support the Autoimmune Registry by joining our registry or sharing it with a friend who has an autoimmune condition. Together, we can better tackle the underlying causes of all autoimmune diseases.

Please support the Autoimmune Registry by joining our registry or sharing it with a friend who has an autoimmune condition. Together, we can better tackle the underlying causes of all autoimmune diseases.