Rare Disease Day Handout

We participate annually in Rare Disease Day events! For more information on Rare Disease Day and how you can participate, visit the NORD website. Handout for your use: Please print out copies of this handout to help advocate if you are attending Rare Disease Day events, locally in your town, or wherever you go. Consider handing this out at your Dr’s office, hospital, physical therapy, pain management, …

kfsa-adminRare Disease Day Handout

The Global Genes Project

The Global Genes Project features an article describing how the KFSA was set up by patient advocate Sharon Rose Nissley. Read the article online.

adminThe Global Genes Project

RDA Network case studies KFS

The July newsletter of the Rare Disease Awareness Network features two articles written by Sharon Rose Nissley and Allison Jolley. See the online newsletter.

adminRDA Network case studies KFS

Fall is upon us


Here in the USA, fall is upon us. Leaves are changing color nearby and the air is growing crisp. What is nature doing near you?

adminFall is upon us