Editor’s Choice: IDF Sessions on CGD, IPF Progress and FDA Approval

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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Upcoming IDF Session on CGD!

Are you or someone you know suffering from CGD?

If so, this event is a must-attend!

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breaking news

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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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Jessica Gladwell

Jessica Gladwell

Jessica Gladwell is one of PW's consultants and patient editors. She has lived with late-stage, chronic Lyme and POTS since circa 2002. She has also served as a caregiver to close family members with late-stage, chronic Lyme. Before diagnosis, she served as a business consultant for a large corporation and PM for a small digital branding agency. Now, she is proactive in the rare and neurological disease community, spreading awareness and advising on matters of health and lifestyle when living with a chronic illness.

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