Bedford Mother Shares Her Story at Rare Disease Day March 12, 2015 by Lauren Eva On February 23, 2014, aka Rare Disease Day, Lisa Cimino – a member of the NephCure family and mother to FSGS patient Brianna – shared her story and talked about what living with a rare disease is like at the State House in Boston. Read her story here.
Susie says April 7, 2015 at 4:48 pm My son was diagnosed with FSGS in Dec 2014. I wanted to find a local support group or someone local that is going through this same disease. If I could ask questions about things you’ve done or didn’t do. I live in concord, Ma and saw your story from Bedford. Please let me know if we could connect. Thank you