# Ataxia (rare disease warrior / #AlanEveryWhere )

**URL:** <https://forum.livingwithataxia.org/t/ataxia-rare-disease-warrior-alaneverywhere/5440>\
**Category:** General\
**Created:** [December 4, 2016, 8:58am UTC](https://forum.livingwithataxia.org/t/ataxia-rare-disease-warrior-alaneverywhere/5440 "2016-12-04T08:58:52Z")\
**Posts on this page:** 2\
**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:** [December 4, 2016, 8:58am UTC](https://forum.livingwithataxia.org/t/ataxia-rare-disease-warrior-alaneverywhere/5440/1 "2016-12-04T08:58:52Z")

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UK = Findacure \>Empowerment Advisory Committee

[http://www.findacure.org.uk/about-us/#empowermentcommittee](http://www.findacure.org.uk/about-us/#empowermentcommittee)

Europe = PSR Orphan Experts Launches Patient Organization Advisory Board

[http://www.orphandrugexperts.com/site/news-detail/37-psr-orphan-experts-launches-patient-organization-advisory-board.html](http://www.orphandrugexperts.com/site/news-detail/37-psr-orphan-experts-launches-patient-organization-advisory-board.html)

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**Author:** ![Punk](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/punk/32/5050_2.png) [@Punk](https://forum.livingwithataxia.org/u/Punk)\
**Post date:** [December 6, 2016, 7:46am UTC](https://forum.livingwithataxia.org/t/ataxia-rare-disease-warrior-alaneverywhere/5440/2 "2016-12-06T07:46:33Z")

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Brilliant Alan, you are my main source for information. In my dark days thinking about Cassie, your input gives me real hope and that’s all I am looking for. Thanks again