Idine Espanyas
Aes Sedai
Rare Disease Day
Rare Disease Day was created in 2008 and is observed on February 28th, or February 29th in a leap year. This celebration is a global movement to advocate for equity in diagnosis, therapies, treatment, healthcare, and social opportunity for people living with rare diseases. Throughout this month, we will be sharing stories of members in our community and others who are impacted by rare diseases, and their struggles and successes in accessing proper diagnosis and treatment. Please feel free to share your own stories if you or someone in your real life community is impacted by a rare disease.
What is a Rare Disease?
A rare disease is defined as a disease that affects fewer than 1 in 2,000 people. According to rarediseaseday.org, here are the common challenges faced by those diagnosed with a rare disease:
“The lack of scientific knowledge and quality information on the disease often results in a delay in diagnosis.
The need for appropriate quality health care engenders inequalities and difficulties in access to treatment and care. This often results in heavy social and financial burdens on patients.
Owing to the broad diversity of disorders and relatively common symptoms which can hide underlying rare diseases, initial misdiagnosis is common. In addition, symptoms differ not only from disease to disease, but also from patient to patient suffering from the same disease.
Research needs to be international to ensure that experts, researchers and clinicians are connected.”
Resources
What is a rare disease?
What is rare disease day?
National Association for Rare Disorders
If you would like to show support, we also have some signatures that our lovely graphics team has made.