Today is Rare Disease Day
Today is for raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers.
(Undiagnosed Rare Disease Patients)
In the USA, it’s considered “rare” if it affects fewer than 200,000 individuals
In Europe, a disease or disorder is defined as “rare” when it affects fewer than 1 in 2000 people
80% of rare diseases have a genetic origin
70% of genetic rare diseases start in childhood
95% of rare diseases have no treatment or therapy, for the remaining 5% treatment access or cost is an issue
Only about 50% have a disease-specific foundation or patient organization
#RareDiseaseDay @rarediseaseday @rarediseases
#WeCareAboutRare @globalgenes
*Rare diseases statistics vary – Info Here Courtesy of EURORDIS, Global Genes and NORD 2018
Thank you for your continued support of our family and the entire rare disease community!
Much Love,
Gina, Ava, Oskar & Lucy
Contact information: Gina Szajnuk (Zanik)
Co-founder and Executive Director
E: ginaszajnuk@gmail.com
C: (310) 883-4353
To Read: “What is the hardest part of being undiagnosed?” by Gina Szajnuk
To Read: “Undiagnosed is a Diagnosis” by Ava and Gina Szajnuk
To Read: The Szajnuk Journey