“Free” med for the minority of rare disease patients was at a cost to the majority February 21, 2019Health#Autoimmunedisease, #Bernie Sanders, #berniesanders, #clinicalTrials, #coralgables, #FoodandDrugAdministration, #jacobusPharmaceuticals, #LambertEaton, #raredisease, #rarediseaseday, Catalystpharmaceuticals, FDA, Firdapse, LEMS, NORD, Spoonie By Dawn DeBois Imagine reading about how life-changing a med is and not being able to have a doctor write it for you?
When a drug for a rare disease gets FDA approval November 29, 2018Health#FoodandDrugAdministration, #globalgenes, #invisibleillness, #LambertEaton, #LEMS #FDA #Approval #raredisease #autoimmune #neuromuscular #Firdapse #, #trials, Advocacy, Catalystpharmaceuticals, Disability, Neurology, Spoonie By Dawn DeBois This means that our invisible illness is now visible in the form of an FDA approved drug to treat our illness and give us our quality of life back.