Catch Up – Awareness Week/Month CMT

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I really have been neglecting this blog lately. Spending too much blog time on Facebook. Just because it’s the flavour of the month, though I think it’s taste is beginning to get a little bitter. However there are quite a few user support groups on there for HNPP, CMT and all manner of other things. It takes a little more effort posting here, which just goes to prove I’m just lazy at heart.

It’s September it’s CMT Awareness Month…

I can’t say I feel very positive about it, or enthused in any way. It sometimes seems that there are so many rare diseases scrabbling for awareness that every week is an awareness week of some type or another. I think I have awareness week fatigue. It’s good to have Rare Disease Day, there is a good feeling of solidarity during that week.

However, I should point out that the good people at CMT UK have been doing a good job, organising, presenting, meeting, and  providing support for all with CMT and other HMSNs which does include HNPP.

I’ve added a few more links to the blogroll, most notably The Song Life Sings which has information and support links for those who have G.A.N. – Giant Axonal Neuropathy    – What Is GAN

Another Blog of note, which I have linked to on the 360 page, is Scott Grant’s Random-Things , A rather amusing and insightful blog looking at life through the random things found along the way.

Another more specific to HNPP blog, is HNPP – Our Story , which has posts on the dilemmas facing parents and children when HNPP has been diagnosed.

All of these links can be found in the Blogroll, along with other links to information and support sites.

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One response »

  1. Hi Jon, welcome back altho I know what you mean about overdosing on rare conditions….there does seem to have been an influx lately. Great to see lots of new comments on Facebook tho, inputs & replies on varying symptoms with ‘us ole fogies’ giving advice to what I believe is an increasing number of young people being diagnosed with HNPP, I do include my daughter in this and therefore I would like to say HNPP – Our Story is a good read. Welcome back – Ali & Scarlett -StHelens UK

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