Editor’s Choice: Getting Diagnosed with, Living with, Fighting, and Treating Rare Disease

Happy Friday!

We have an FDA approval this week for rare cancer patients! We also have the details on a hypophosphatasia fundraiser.

There’s also an inspiring story of of a mom who stopped at nothing to get a diagnosis for her child and went on to become an advocate. Lastly, the IDF Community highlights what life is like with CVID… something everyone should know.

So sit back and enjoy this week’s Editor’s Choice.

 



Mother’s Intuition Leads to Diagnosis and Hope for Child Battling ADNP

ADNP is super rare, and not surprisingly, super hard to diagnose.

See how this mom obtained a diagnosis for her child, and then became a powerful voice in advocacy.



FDA Approves Mantle Cell Lymphoma Treatment

Exciting news for those affected by this rare cancer!

Read more here.



Run (or Walk) to Make Magic for Children with Hypophosphatasia

What better reason to go to Disney World?

Check out why you should plan your next trip there!


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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