The reason of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and the impact on individuals and or course their family lives. In addition, the campaign targets policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases. It is so important to build awareness of rare diseases because 1 in 20 people will live with a rare disease at some point in their life. There is no cure for the majority of rare diseases and many will go undiagnosed. Rare Disease Day improves knowledge to the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living and supporting individuals and families living with rare diseases.
Deaf-Blindness in all of its uniqueness would certainly fall under Rare Disease. Have you ever checked out this list from the National Organization for Rare Disorders (NORD)?
https://rarediseases.org/for-patients-and-families/information-resources/rare-disease-information/ Don’t see a description that would describe your individual deaf-blindness?- then it is very rare.
You can Rise Up For Rare Disease Day by getting involved and having some fun! Here are some ideas and ways to get you started https://rarediseases.org/rare-disease-day/