# Launch of Wales Raredisease Implementation Plan on Raredisease Day

**URL:** <https://forum.livingwithataxia.org/t/launch-of-wales-raredisease-implementation-plan-on-raredisease-day/2069>\
**Category:** General\
**Created:** [February 28, 2014, 10:07pm UTC](https://forum.livingwithataxia.org/t/launch-of-wales-raredisease-implementation-plan-on-raredisease-day/2069 "2014-02-28T22:07:02Z")\
**Posts on this page:** 5\
**Page:** 1

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**Author:** ![Alan\_T](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/alan_t/32/31_2.png) [@Alan\_T](https://forum.livingwithataxia.org/u/Alan_T)\
**Post date:** [February 28, 2014, 10:07pm UTC](https://forum.livingwithataxia.org/t/launch-of-wales-raredisease-implementation-plan-on-raredisease-day/2069/1 "2014-02-28T22:07:02Z")

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Today saw the launch of the Wales Raredisease Implementation Plan

(the first nation to do so)

document = [http://wales.gov.uk/consultations/healthsocialcare/disease/?status=open&lang=en](http://wales.gov.uk/consultations/healthsocialcare/disease/?status=open&lang=en)

The event was attended by varios media, ITV, BBC, S4C and broadcast - regionally, UK and Global

ITV news item [http://www.itv.com/news/wales/story/2014-02-27/welsh-government-launch-plan-to-tackle-rare-diseases/](http://www.itv.com/news/wales/story/2014-02-27/welsh-government-launch-plan-to-tackle-rare-diseases/)

Radio broadcast via Radio Cymru, Radio Wales and more

Alan`s Photos from the event [http://www.flickr.com/photos/alanroygbiv/sets/72157641661795553/](http://www.flickr.com/photos/alanroygbiv/sets/72157641661795553/)

Newspaper coverage by Western Mail and many more

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**Author:** ![Madere\_dancermom](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/madere_dancermom/32/1324_2.png) [@Madere\_dancermom](https://forum.livingwithataxia.org/u/Madere_dancermom)\
**Post date:** [March 1, 2014, 5:58am UTC](https://forum.livingwithataxia.org/t/launch-of-wales-raredisease-implementation-plan-on-raredisease-day/2069/2 "2014-03-01T05:58:43Z")

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Thank you for your activism, Alan!

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**Author:** ![twirlie\_girl](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/twirlie_girl/32/1258_2.png) [@twirlie\_girl](https://forum.livingwithataxia.org/u/twirlie_girl)\
**Post date:** [March 1, 2014, 1:21pm UTC](https://forum.livingwithataxia.org/t/launch-of-wales-raredisease-implementation-plan-on-raredisease-day/2069/3 "2014-03-01T13:21:46Z")

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Thank you for all that you do.

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**Author:** ![dougmusical](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/dougmusical/32/607_2.png) [@dougmusical](https://forum.livingwithataxia.org/u/dougmusical)\
**Post date:** [March 1, 2014, 1:35pm UTC](https://forum.livingwithataxia.org/t/launch-of-wales-raredisease-implementation-plan-on-raredisease-day/2069/4 "2014-03-01T13:35:56Z")

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Thanks Alan and Steve - wish I could have got there - but glad I said no, because I was so tired after London Neuro hospital visit on Thurs. Got up at 5.30am - got home at 10.30pm Was told by Dr. Giunti that I am a carrier of Friderichs Ataxia, this was discovered because Dr. Giunti had passed my DNA etc to another Neuro Consultant who does DNAs etc. It seems it was passed down to me from one parent only - so therefore I have not got it or never will, so it will not affect my Sensory Ataxia. They are now looking at a some more of my DNA.

Cheers for now - Doug. Bristol.

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**Author:** ![rose1](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/rose1/32/736_2.png) [@rose1](https://forum.livingwithataxia.org/u/rose1)\
**Post date:** [March 2, 2014, 11:31pm UTC](https://forum.livingwithataxia.org/t/launch-of-wales-raredisease-implementation-plan-on-raredisease-day/2069/5 "2014-03-02T23:31:06Z")

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Thanks for the info, Alan! ;o)