This website is intended for audiences outside the United States.

GAUCHER

Gaucher Awareness Day

Gaucher disease can have life-changing symptoms so early and accurate diagnosis is essential. This is why we must work together to raise awareness of this rare condition on 1st October.

Get news, stories and updates straight to your inbox

1st October is International Gaucher Day and we’re very much looking forward to making some noise about this rare and genetic condition! The more people know about this disease, the more patients will receive a timely and correct diagnosis.

What is Gaucher disease?

Rare and genetic, Gaucher disease means waste substances build-up and cause all sorts of problems in the body1 yet we’ve met so many incredible and positive patients that are an inspiration.

There’s lots more to tell you about Gaucher disease, from signs and symptoms to diagnosis, and you can get all this information here:

Join us this year

We raise awareness to help patients get an early and accurate diagnosis. We hear from several Gaucher patients on what the journey to diagnosis is like and how diagnosis has helped them to live a full life:

We can’t raise awareness without you! We’re in the process of planning our next Gaucher awareness activities and we want to keep you updated.Sign up to our newsletter and we’ll send you details nearer the time.

What happens on International Gaucher Day?

Well, last year, we asked people to take a picture of themselves, with their arms outstretched, linking arms or holding hands with someone they care about, then share the picture on Instagram, Facebook or Twitter using the hashtag #Together4Gaucher.

By tagging a friend and inviting them to join the chain of support we really started spreading awareness of Gaucher disease. People also joined our Thunderclap, the crowdspeaking platform, to share the single message that we are #Together4Gaucher.

Have a look at just some of the #Together4Gaucher snaps:

#Together4Gaucher Social Awareness Campaign Image 1
#Together4Gaucher Social Awareness Campaign Image 2
#Together4Gaucher Social Awareness Campaign Image 3

Here are the results!

The day was a great success. The #Together4Gaucher hashtag was used 2,693 times, 161 photos were shared across Facebook, Twitter and Instagram and it’s likely that 566,269 people saw our Thunderclap campaign messaging.

The rare disease community is small, so the fact that so many people held hands to show support for Gaucher is a huge achievement. Thanks to everyone that joined us on the day, helping to connect our community out into the world.

Related articles

quote_grey

We need to make rare diseases known so we are not forgotten.

Gaucher Disease - Early Diagnosis

Gaucher

Monica

Have you got a story?

Have you taken part in an awareness campaign or do you have plans to? We would love to hear about it. Raising awareness of rare diseases is so important which is why we want to make as much noise as possible about your activities, events or anything else that gets people talking about rare conditions!

Tell us your story

Rare Diseases Newsletter

Get news, stories and updates straight to your inbox