Event

01 Feb 2019
When:
Fri 01 February, 2019
To :
Thu 28 February, 2019
Location
Global, Nationwide, Great Britain, England, Scotland, Wales, Northern Ireland
2019 events in United Kingdom
For Rare Disease Day (Tuesday,
01 Feb 2019 - 28 Feb 2019 Global, Nationwide,...
Join Rare Disease UK for our
14 Feb 2019 Cardiff
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CDH UK is bringing families
23 Feb 2019 Edinburgh
For Rare Disease Day this
23 Feb 2019 Newcastle Upon Tyne
Goals of this Symposium:
25 Feb 2019 Newcastle upon Tyne
Royal Holloway will be
26 Feb 2019 Egham, Surrey
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Findacure's Drug Repurposing
27 Feb 2019 London
Join Rare Disease UK for
27 Feb 2019 London
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The Biomedical Society,
28 Feb 2019 Wolverhampton
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All welcome, free tickets
28 Feb 2019 Cambridge
Join Rare Disease UK for
05 Mar 2019 Edinburgh
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3rd Annual Welsh Rare Inherited
13 Mar 2019 Cardiff
United Kingdom

#ShareYourRare to #FightEB 01 February 2019 - 28 February 2019 Global, Nationwide, Great Britain, England, Scotland, Wales, Northern Ireland
Hosted by DEBRA UK

For Rare Disease Day (Tuesday, 28 February), help us #FightEB and show your support for the EB Community.

We’re joining in with Rare Disease Day’s #ShowYourRare campaign to #FightEB and raise awareness of the condition throughout February.

Help us reach more people suffering from EB – simply share a selfie on Twitter, Instagram and Facebook with the hashtags #FightEB and #ShowYourRare. Everyone can get involved, you do not have to have EB to take part!

If EB is so rare, why should I care?

When you have EB, every step can feel like walking through fire. Standing still can feel like treading on spikes. Some people with EB say it feels like constantly swallowing razor blades.

There are 5,000 people suffering from EB in the UK and half a million worldwide.

Even in its least severe forms, EB causes lifelong disability and pain.

Expert care and support is vital to manage the condition.

When you have a rare condition like EB, accessing the right care and support can be challenging.

We’re fighting hard to make sure people with EB have access to the care and support they need:

We work in partnership with the NHS to bridge the gap between health and social care.

We help fund specialist EB nurses to provide the best possible medical care.

And our experienced EB Community Support Managers provide practical, emotional and financial support to people suffering from EB and their families.

Working together, DEBRA UK’s EB Community Support Managers and specialist EB nurses support EB Community at home, in hospital, at specialist outreach clinics and over the phone.

Without your support, this life changing service simply wouldn’t happen.

So go on, raise awareness of EB and show your support for the EB Community throughout February by posting a selfie on Twitter, Instagram and Facebook with the hashtags #FightEB and #ShowYourRare.

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