When my 12-year-old daughter Cammy was diagnosed with Rett syndrome at 20 months old, we were told it’s a rare neurological disorder that primarily affects girls because it’s caused by a... #prevalence#raredisease#rarediseasecommunity https://t.co/0UuuwPyq5l via @COPDnewstoday
Does my disease define me? I've been battling this complex question since I was diagnosed with cystic fibrosis at age 5. Most of my CF friends would say no. The disease is a part of them, but it doesn't make up their entire... #CFdiagnosis#humor#identity https://t.co/rGjL0Rlnle
Since 2008, Rare Disease Day — the last day of February — has brought together patients, caregivers, family members, friends, and advocates from around the world to raise awareness and improve... #awareness#EURORDIS#NationalOrganizationforRareDisorders https://t.co/QOHqwzNYXu