Editor’s Choice: Orkambi Shouldn’t be a Pie in the Sky for UK Patients

Happy Independence Day Weekend Everyone!

We have the latest update on the UK cystic fibrosis fight for Orkambi. We also have a great contribution on the importance of taking care of yourself as a caregiver.

Also, from one our rare disease writers, we have a piece on trusting doctors when they sound confident about diagnosis and treatment. Lastly, a Boston Red Sox player takes a pie in the face for rare disease!

So sit back and relax, and check out this week’s Editor’s Choice.

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Boston Red Sox Take a Pie in the Face for Gastroparesis

Check out this inspirational story on a Red Sox player supporting rare disease.

Read more here.

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Mum of Boy with CF is Fighting for Orkambi in the UK

This mom needs your help to bring Orkambi to the UK!

Read more here.

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For Caregivers, Self-Care is Not a Luxury – It’s Necessity!

Check out this PW Contributor’s advice for rare disease caregivers.

Read here.

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Trust Your Gut: Doctors Are Not Always Right

Always get a second opinion.

Read why here.

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Do you have a rare disease experience of your own? Share with us here.

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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