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Rareshare Newsletter - July, 2017

Last updated 21 Jul 2017, 02:17 AM

 

Our Vision

With the relaunch of RareShare.org, we would like our members to join in advancing the website’s vision. Our goal is to support new and existing communities to become an interactive experience rather than static online forums.  In order to achieve this, RareShare believes it will take a collaborative effort.  We can accomplish this by building even stronger relationships with our current community members and the volunteers who contribute their time and effort to building and maintaining the website.

RareShare’s content will include:

  • up-to-date, medically-reviewed disease descriptions,

  • patient-friendly eBooks that provide more in-depth information,

  • interviews with leading medical experts, including podcasts about specific rare disorders and discussions of broader issues like insurance,

  • information on registries or other subjects of interest to the rare disease community as a whole,

  • and, finally, resources for learning about and understanding clinical trials.

Wish to share with RareShare?

  • Do you know of other resources that ought to be included on the website?  Share it! Tell us what you think should be added to the website.

  • Do you know physicians, other healthcare professionals or researchers who would be appropriate for one of our podcasts, or to review rare disease medical information? Share it!

  • Do you know family, friends, colleagues who would benefit from the RareShare website?  Share it via your social media.

In addition to the website’s content, your feedback about its design and functionality is welcome.  Are we missing anything?  Is the website easy to navigate?  Your insights, experiences and suggestions on how to grow and improve the RareShare website will help us better serve you.  Contact us via e-mail at support@rareshare.org.

As the new RareShare grows, our vision is to expand all of the above mentioned services and provide as much support and information as we can for each individual community. We want to make RareShare a true community, governed by a collaborative and supportive approach.

 

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