Tag Archives | Rare Disease Day

4 days to Rare Disease Day

This Rare Disease Day can you post a photo of you blowing a raspberry at cavernoma, with the link http://bit.ly/blowraspberries2019, to promote our £3 per month campaign to find a cure?

We want to make as much noise as possible about cavernoma this Thursday 28th February.  If you use the hashtag #BlowRaspberries or tag photos to @CAUK1 or CavernomaAllianceUK we’ll then re-post.

You can also help by asking your local paper, radio station or TV network to share your cavernoma story and improve awareness.   We have a template press release you can use, along with other campaign materials:

Rare Disease Day is a global event held to raise awareness about rare diseases and their impact on patient lives.  Building awareness is incredibly important with 1 in 20 people living with a rare disease at some point.  Despite this there is no cure for the majority of rare diseases, including cavenoma.With your help we can change that!

To donate £3 a month* click here.

* When you click through you will be invited to make a single £3 donation. To make you donation monthly, making even more of an impact, click the “monthly” tab.

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