# World Orphan Drug Congress Patient Advocacy Groups eBook

**URL:** https://forum.livingwithataxia.org/t/world-orphan-drug-congress-patient-advocacy-groups-ebook/2458
**Category:** General
**Created:** [October 31, 2014, 3:50pm UTC](https://forum.livingwithataxia.org/t/world-orphan-drug-congress-patient-advocacy-groups-ebook/2458 "2014-10-31T15:50:02Z")
**Posts on this page:** 3
**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: [October 31, 2014, 3:50pm UTC](https://forum.livingwithataxia.org/t/world-orphan-drug-congress-patient-advocacy-groups-ebook/2458/1 "2014-10-31T15:50:02Z")

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World Orphan Drug Congress Patient Advocacy Groups eBook

**Download this eBook to find out:**

- Who the key patient advocates of today's orphan and rare disease industry are

- The prospectives of key patient advocates on current and future challenges which face the orphan drug industry

- The importance of patient advocacy groups within today's industry and the foreseeable future

- What each advocate believes is the most significant change needed to improve the orphan drug development market

- See more at: [http://www.terrapinn.com/template/live/engage/6648/15597?&pk\_campaign=Doc-listing&pk\_kwd=E6648#sthash.6RSAYJvb.dpuf](http://www.terrapinn.com/template/live/engage/6648/15597?&pk_campaign=Doc-listing&pk_kwd=E6648#sthash.6RSAYJvb.dpuf)

[http://www.terrapinn.com/template/live/engage/6648/15597?&pk\_campaign=Doc-listing&pk\_kwd=E6648#sthash.6RSAYJvb.dpbs](http://www.terrapinn.com/template/live/engage/6648/15597?&pk_campaign=Doc-listing&pk_kwd=E6648#sthash.6RSAYJvb.dpbs)

Total Orphan Drugs [http://www.orphan-drugs.org/?\_\_utma=16930108.210708474.1414769966.1414769966.1414769966.1&\_\_utmb=16930108.4.10.1414769966&\_\_utmc=16930108&\_\_utmx=-&\_\_utmz=16930108.1414769966.1.1.utmcsr=google](http://www.orphan-drugs.org/? __utma=16930108.210708474.1414769966.1414769966.1414769966.1&__ utmb=16930108.4.10.1414769966& __utmc=16930108&__ utmx=-&__utmz=16930108.1414769966.1.1.utmcsr=google)|utmccn=(organic)|utmcmd=organic|utmctr=(not%20provided)&\_\_utmv=-&\_\_utmk=35699360&FT\_src=google&FT\_med=organic&FT\_cmp=(organic)&FT\_kw\_path=(not provided)\<\_src=NA\<\_med=NA\<\_cmp=NA\<\_kw\_path=NA

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### Author: ![chandu\_G](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/chandu_g/32/123_2.png) [@chandu\_G](https://forum.livingwithataxia.org/u/chandu_G)
#### Post date: [November 3, 2014, 3:12pm UTC](https://forum.livingwithataxia.org/t/world-orphan-drug-congress-patient-advocacy-groups-ebook/2458/2 "2014-11-03T15:12:52Z")

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Very Informative, thanks for share alan thomas,are u going to attend upcoming World Orphan Drug Congress at Brussels,November? Iam trying to attend this as Patient Advocate of my Ataxia Support Group and our Umbrella Group @INDIAN ORGANISATION OF RARE DISEASES,

Please Let me know,

Thanks,

chandu George.

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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: [November 3, 2014, 6:46pm UTC](https://forum.livingwithataxia.org/t/world-orphan-drug-congress-patient-advocacy-groups-ebook/2458/3 "2014-11-03T18:46:14Z")

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Hello

I am indeed attending, plus there will be Ataxia S Wales "pop-up" banner will be on display in the patient alliance

I hope to meet you, in person, (we have been virtual "friends" online for a long time) (twitter @alanROYGBIV )

Looking forward to it

World Orphan Drug Congress - 12-14th November - Brussels, Europe 2014

[http://www.terrapinn.com/conference/world-orphan-drug-congress/index.stm](http://www.terrapinn.com/conference/world-orphan-drug-congress/index.stm)