Editor’s Choice: Art & Cystinosis PLUS Treatment Alternatives for Cystic Fibrosis

Happy First Week of February!

Do you have a rare disease and find art as an outlet for you? Are you always fighting to find more ways to treat your rare disease in hopes of a better quality of life?

This week we have three inspiring stories around cystinosis, cystic fibrosis and myasthenia gravis. Additionally, we have an update on an event you won’t want to miss.

Kick back and relax! And let us know what you think about this week’s Editor’s Choice.



ronnie and girlfriend


Cystic Fibrosis Patients Vote for Alternatives to Traditional Treatment

Check out Founder of CysticLife Ronnie Sharpe’s official press release about CysticLife’s partnership with Althea Health and the Mayo Clinic.

Together, we can improve the quality of life for so may with cystic fibrosis through patient driven research.



Inspiring Art Shares Unique Perspective On Cystinosis

The non-profit Cystinosis Research Network (CRN) created the sponsored the “Dream, Achieve, Inspire” art exhibit.

Now, the exhibit has been traveling the world to bring much-needed awareness to cystinosis. Read more about these warriors here!

Event Announcement: 2016 Acromegaly Coneference Details Here!

You are not going to want to miss this… The 2016 Acromegaly Community Bi-annual Meeting, April 29-May 1st!

Click here for more details about the event and get out there to support acromegaly awareness!



How a Snowflake Builds a Snowman Family, Part 1

PW Contributor Lisa Douthit gives us a “How-to” guide in the world of rare disease.

As a cancer and auto-immune disease survivor, there’s no one better suited than her to give us some much needed advice in the world of Myasthenia Gravis.


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