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Showing posts with label rare disease. Show all posts
Showing posts with label rare disease. Show all posts
23 Dec 2016

Building a website for your group or charity on a shoestring budget

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I recently took part in a webinar aimed at helping rare disease patients who want to start a website for their patient group or small charit...
21 Mar 2016

Disabling effects of PoTS shown in largest ever survey and how educating health professionals can help

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Postural orthostatic Tachycardia syndrome or PoTS, is a complete bastard of a condition. It doesn't kill, thankfully, but it can quite ...
22 Dec 2015

Can you help #careforLaura crowdfund fund life-saving surgery for Laura's Ehlers Danlos syndrome?

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As you may know, since 2013 have been disabled by the rare disease (or rarely diagnosed disease), Ehlers Danlos syndrome. I've been at r...
10 Apr 2013

Flipping fantastic, wheely great - gadgets to keep yourself going

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So recently, I have found myself rather incapacitated and standing for longer than a few minutes is proving difficult. It seems that while ...
17 Mar 2013

Raising awareness of Ehlers Danlos Syndrome - an under diagnosed rare condition

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Lara Bloom, who runs the Ehlers Danlos Society charity, is making a documentary about EDS to help raise awareness of what is a rare but also...
28 Feb 2013

Rare Disease Day: Discovering the great work of small charities

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We've just been to the Rare Disease Day event at gothic looking Royal Holloway University in Surrey.  The boys were given the day off...
29 Jan 2013

Chemo for little Dylan's Nephrotic Syndrome

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I wrote a while ago about my nephew, Dylan and his fight against Nephrotic Syndrome, a rare disease that affects his kidneys. Next week, ...