Happy Friday Patient Worthians!
This week we have two awesome contributions. One addresses grieving as a parent of a child with rare disease. Another addresses living with CRPS and other rare diseases while in high school.
We also have an incredibly inspiring interview with an 11-year mesothelioma survivor. Lastly, we have details on an upcoming Cystinosis Research Network event!
We hope you are as excited as we are to check out this week’s Editor’s Choice!
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On the Day of Diagnosis, the Grieving Begins
PW Contributor Denise is a rare mom with a child battling chronic illness.
Read her experience here.
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PW Contributor Karen is in high school. As if this environment isn’t harsh enough, she’s battling multiple rare disorders.
Check out her journey here.
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We had the pleasure of talking to Heather about her advocacy work for mesothelioma.
Read about her rare disease journey and how she is giving back.
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The 2017 Cystinosis Research Network Family Conference is Coming Soon!
Mark your calendars for this cystinosis event you won’t want to miss!
Check out the details here.
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