Happy Friday Patient Worthians!
You might notice that the headline has a lot of acronyms in it… ah, welcome to the rare disease world! We DO have answers for what all of that means. For one, we have info on the 2017 IDF National Conference. Secondly, we have information on a unique FDA approval on treatment for Batten Disease.
We also have some information on “treatment” for idiopathic pulmonary fibrosis (IPF). Lastly, May is Cystinosis Awareness Month so we have a story for you!
So sit back and enjoy this week’s Editor’s Choice!
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Are you or someone you know suffering from CGD?
If so, this event is a must-attend!
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FDA Approves Drug for a Rare Disease Due Resulting from Phase I/II Clinical Trial
For this Batten Disease treatment trial, there was no phase III, but there was fDA Approval.
Find out more here.
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Scientists Insist Exercise May Change Course of IPF Progression
Exercise therapy isn’t unheard of in rare disease. Think: CF, Dysautonomia, etc.
Read what scientists have to say about exercise for IPF.
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How This Group is Leading Kids with Cystinosis to Self-Advocacy
Self-advocacy for your rare disease is always important for progress.
Read how this group is helping kids take on that challenge.
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