National Organization of Rare Disease
My Story. NORD has helped and supported my family financially and emotionally. My wife was diagnosed with a rare autoimmune disease that started as a sinus infection that suddenly left her blind in one eye and partially blind in the other eye. The months that followed were filled with fear, anxiety, stress and sleepless nights. We were either driving to or from a doctor’s appointment receiving treatment for a still unknown / undiagnosed problem, or on the phone with insurance and making more appointments. There was a day when she was receiving Intravenous treatment in one arm and at the same time Mayo was drawing blood from other arm to test other possible causes for the onset of bilateral optic neuritis. The treatments were working, but there was no acuity, or color with her vision. It would be 6 months before her vision was back to a point where she could independently navigate unfamiliar areas or drive a car. Her milestones were measured in less doctors’ appointments this week or the ability to care for and enjoy time with the children. What followed was almost harder. We received a diagnosis, now we knew what to do and how to treat. The rarity meant there is no “FDA approved” course of treatment, which means Blue Cross Blue Shield doesn’t have an ICD-10 code and would deny coverage of any further doctors visits or treatments associated with the disease. The burden of the treatment cost of $60,000 per quarter would fall on us alone. So, the months that followed were filled with recovery, hospital and doctors’ bills, and countless hours on the phone begging insurance, reaching out to different organizations, even the manufacturers of the drug for assistance. This was met with callous rejection, depression, and an impending doom of another autoimmune attack that wouldn’t be treated and would leave her permanently blind, among other complications. The demoralizing feeling of complete ineptness that had to be swallowed because she and the children are looking to you for hope and continued faith is hard to describe. The nights were filled with maybe’s, what if’s and trying to rally for the next day’s round of rejections. The first time we were able to have a restful night came 8 months later when NORD contacted us. They understood what we were going through, the unique and individual trial that we were living in and responded with we are here to support you. The team of people working for NORD listened to our story, they empathized with our story, and they acted on our story. They made phone calls for us, they walked us through the paperwork, and they agreed to support our family with the ongoing care needed. They were in constant contact and understanding of the ever-changing landscape of finding the right team and care to get and stay healthy. NORD have been a huge blessing to my family, and we are grateful for everything they have done for us.
NORD’s Story. Since 1983, NORD has been a national steward and a steadfast partner helping those who battle and care for rare disease feel seen, heard, supported and connected. We’re a full-service, mission-driven nonprofit reimagining a future where every person with a rare disease, and their families live their best lives.
NORD was first national nonprofit to represent all individuals and families affected by rare disease. Today we’re the only organization working at the intersection of care, research, policy and community for all rare diseases.
Our motto is “Alone we are rare. Together we are strong.” This motto embodies our approach to enable, energize, and inspire individuals and advocates to be forces for positive change. We serve as a convener for progress built on what matters most to patients.
