Rare Disease Day: Why it matters and what you can do to help.

This year, Rare Disease Day will take place on February 28th. 

Rare Disease Day is an international movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. 

The idea is that whilst rare diseases are rare, and it’s difficult to bring attention to them, together, they aren’t rare and collectively, we can make more noise.

Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year.

Rare Disease Day was set up and is coordinated by EURORDIS and 65+ national alliance patient organisation partners, providing an energy and focal point that enables rare diseases advocacy work to progress on the local, national and international levels.

Raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers.

Why focus energy on Rare Disease Day when we have Rett Syndrome Awareness Month in October? 

Many families of people with Rett often want to focus on their own rare disease or condition and many families affected by other rare diseases might feel the same. 

When something affects our lives and the lives of our families as much as a condition like Rett Syndrome, we want people to know what it is. Remember, when you shout about Rare Disease Day, you are bringing attention to Rett Syndrome as a rare disease and so are all the other people who are shouting about Rare Disease Day for their condition. We just have more opportunities to be heard! We will still be supporting Rett Syndrome Awareness Month in October, like always. 

Rare Disease Day gives us another ‘way in,’ when trying to talk to our friends, communities and potential supporters about life with Rett Syndrome, the potential for treatment and the work of Reverse Rett.

One of the ways you can support Rare Disease Day 2022 is by lighting up your front window on February 28th 2022 at 7pm local time. Who knows which other members of your community will be encouraged seeing someone else, ‘light up for rare.’ www.rarediseaseday.org/downloads/lightupforrare/