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Fundraising, events, summer camps, support groups Tell us about your UK fundraising activities and local meetings

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Old 27-02-15, 08:13 AM   #1
Trish
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Default Rare disease day

This comes under the heading of events.

Not a HD Event as such but how many of you were aware tomorrow (Saturday 28 Feb 2015) is RARE DISEASE DAY 2015

HD is mentioned in the scroll of diseases at the end of this video so we haven't been totally forgotten but I am disappointed again that, with proper promotion, it could have been a great opportunity to get HD out there which doesn't seem to have been capitalised on.

I did a photo with Ruby and Ruby Tuesday (they make it far more interesting than just me and my ugly mug lol. It has been loaded onto the Photo Flickr Stream so at least there is one HD mention. Anyone else seen the site; uploaded a photo or read about the day? I heard about it via Twitter.

Photo can be seen HERE
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Old 27-02-15, 12:11 PM   #2
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Default Re: Rare disease day

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Hi Trish

I raised the Rare Disease UK connection in the Help needed for appg thread in October and December last year: #19 and #24.

The Rare Disease UK website has quite a bit of stuff to wade through.

Interestingly, and cleverly, Rare Disease Day is actually the 29th February.

Rare Disease Day is coordinated by EURORDIS: The Voice of Rare Disease Patients in Europe

If you look at Rare Disease Day US you will see that they are really "up for it".

I just can't believe that in the constantly changing pace and face of the Internet the HDA website hasn't managed to update itself to current standards of visual and verbal interaction - including the mention of relevantly connected events such as the above.
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Last edited by Allan; 27-02-15 at 01:57 PM. Reason: Y O Y O Y O Y O ..........
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Old 28-02-15, 05:51 PM   #3
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Default Re: Rare disease day

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Originally Posted by Allan View Post
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Hi Trish

I raised the Rare Disease UK connection in the Help needed for appg thread in October and December last year: #19 and #24.

The Rare Disease UK website has quite a bit of stuff to wade through.

Interestingly, and cleverly, Rare Disease Day is actually the 29th February.

Rare Disease Day is coordinated by EURORDIS: The Voice of Rare Disease Patients in Europe

If you look at Rare Disease Day US you will see that they are really "up for it".

I just can't believe that in the constantly changing pace and face of the Internet the HDA website hasn't managed to update itself to current standards of visual and verbal interaction - including the mention of relevantly connected events such as the above.
.
Another rare Disease Day nearly over but I have been doing a few Tweets and had several ReTweets. Maybe another few hundred people will have been made more aware of rare Diseases and HD than they were when they woke this morning?
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Old 02-03-15, 09:17 PM   #4
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Default Re: Rare diseases Funding - Read all about it!

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HD Projects – and Funding

European HD Network News

Three HD-related projects were submitted to the rare diseases funding call (stage 1) under Horizon 2020 in late 2014. The call was highly oversubscribed with 421 applications, of which only around 10 will be funded following evaluation of stage 2. One project involving EHDN will now go forward to the second stage. The other two were also highly rated, and alternative sources of funding are being sought for them.

So, it’s not easy ………

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