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Thursday, 27 February 2014

2013 HSP Survey Results

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So, it is rare disease day again (Well, as i write, it is in India....). I am pleased to publish the results of the HSP survey which I launc...
9 comments:
Monday, 10 February 2014

New large HSP research study reported

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A  new study about HSP has just been reported. The study took about 10 years to complete, and has examined the genes of about 100 HSP patien...
1 comment:
Monday, 27 January 2014

A trip to the doctor

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This year is a year of action. So, to this end I've been to see my doctor (GP). We talked about three things. Firstly, I've asked ...
Thursday, 9 January 2014

Rare disease patients outnumber cancer patients

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I saw this blog post on the Nord website:  http://blog.rarediseases.org/the-solution-to-diagnostic-delay-may-be-closer-than-we-think/  which...
Saturday, 28 December 2013

Review of 2013

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Another year has passed and its time to reflect on things and consider how different things have become over the year. Knowledge This has...
Monday, 16 December 2013

Another outlet for my messàge, communities update

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The other week I met up with Ian Bennett of the UK HSP support group. Ian has asked me to write a regular feature in the newsletter, coverin...
Wednesday, 20 November 2013

Symptoms update - illness & tiredness

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Ok. I posted a few months ago that I wondered if I was starting to get more signs of HSP. This has been a little bit more and more since th...
Wednesday, 6 November 2013

Overall Update

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I realised the other week that it had been a while since I updated the index for this blog, so I've added the last 12 months of posts to...
Tuesday, 15 October 2013

UK flu vaccination

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I got a letter from my doctor the other day saying I was entitled to a vaccination against flu/influenza. I was a little surprised as I thou...
Sunday, 13 October 2013

Groups around the world

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I posted (about 3 years ago) a list of support groups that I'd found which had websites in English. In the interests of letting more peo...