# Article "Innovation by patients with rare diseases and chronic needs"

**URL:** <https://forum.livingwitherythromelalgia.org/t/article-innovation-by-patients-with-rare-diseases-and-chronic-needs/1105>\
**Category:** Articles and Research\
**Created:** [May 11, 2015, 8:12pm UTC](https://forum.livingwitherythromelalgia.org/t/article-innovation-by-patients-with-rare-diseases-and-chronic-needs/1105 "2015-05-11T20:12:33Z")\
**Posts on this page:** 5\
**Page:** 1

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**Author:** ![Tarsius](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/tarsius/32/701_2.png) [@Tarsius](https://forum.livingwitherythromelalgia.org/u/Tarsius)\
**Post date:** [May 11, 2015, 8:12pm UTC](https://forum.livingwitherythromelalgia.org/t/article-innovation-by-patients-with-rare-diseases-and-chronic-needs/1105/1 "2015-05-11T20:12:33Z")

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Hi everyone,

I found this article an inspiring one. It investigates patients of rare diseases and their carers and how they contribute with solutions and practices that improve their daily lives.

[http://www.ojrd.com/content/10/1/41](http://www.ojrd.com/content/10/1/41)

"Conclusions

Given that hundreds of millions of people worldwide are afflicted by rare diseases, patient and their caregivers can be a tremendous source of innovation for many who are similarly afflicted. Our findings suggest that many patients could be greatly assisted by improved diffusion of known solutions and best practices to and among patients and their caregivers."

Take care!

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**Author:** ![Nel](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/nel/32/194_2.png) [@Nel](https://forum.livingwitherythromelalgia.org/u/Nel)\
**Post date:** [May 11, 2015, 9:50pm UTC](https://forum.livingwitherythromelalgia.org/t/article-innovation-by-patients-with-rare-diseases-and-chronic-needs/1105/2 "2015-05-11T21:50:18Z")

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Thank you for posting the article Tarsius. One of the strengths of this group is members’ willingness to share their discoveries and the ingenuity and striving of individuals to find ways to manage their EM:)

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**Author:** ![mads](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/mads/32/1568_2.png) [@mads](https://forum.livingwitherythromelalgia.org/u/mads)\
**Post date:** [May 11, 2015, 10:55pm UTC](https://forum.livingwitherythromelalgia.org/t/article-innovation-by-patients-with-rare-diseases-and-chronic-needs/1105/3 "2015-05-11T22:55:34Z")

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Great find my friend Tarsius!

Thank you so much for sharing such an insightful paper with the group. I have downloaded it and going to enjoy reading tonight. :)

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**Author:** ![Tarsius](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/tarsius/32/701_2.png) [@Tarsius](https://forum.livingwitherythromelalgia.org/u/Tarsius)\
**Post date:** [May 11, 2015, 11:36pm UTC](https://forum.livingwitherythromelalgia.org/t/article-innovation-by-patients-with-rare-diseases-and-chronic-needs/1105/4 "2015-05-11T23:36:28Z")

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I ended up forgetting to say the most important part - how the people in this wonderful group contribute so beautifully with solutions they come up with or find in a store if they think might help others!

Thank you again :)

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**Author:** ![Tarsius](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/tarsius/32/701_2.png) [@Tarsius](https://forum.livingwitherythromelalgia.org/u/Tarsius)\
**Post date:** [May 12, 2015, 5:48pm UTC](https://forum.livingwitherythromelalgia.org/t/article-innovation-by-patients-with-rare-diseases-and-chronic-needs/1105/5 "2015-05-12T17:48:41Z")

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Hi!

This seems pretty amazing though it might take a while:

[http://www.sciencealert.com/this-new-implantable-device-cuts-required-drug-doses-to-just-1](http://www.sciencealert.com/this-new-implantable-device-cuts-required-drug-doses-to-just-1)

"This new implantable device cuts effective drug doses to just 1% and it could be used to treat chronic pain with zero side effects."

Take care!