Editor’s Choice: Four Patient Stories You’ve Got to Read This Rare Disease Week

Happy Rare Disease Week, Patient Worthians!

As we wind up after a week of celebrating the rare patient community, support networks, and advocacy, we want to highlight four rare disease stories. We have a powerful articles from a dystonia patient, an acromegaly patient, and an ataxia patient. We also have a moving story about a strong mother who spreads awareness about ADNP syndrome.

Sit back and enjoy this week’s Editor’s Choice.

Determined Mother is Raising Awareness of Rare Genetic Disorder Linked to Autism

When Sandra’s son, Tony, was diagnosed with a rare condition called ADNP syndrome, she set out on a mission.

Check it out here.

Amy’s Acromegaly Story: Part 2

Our patient contributor Amy is back, with the second half of her acromegaly journey.

Read more about it here.



Don’t Beat Yourself Up. Chronic Pain Does that Enough

Check out these wise words from a life coach and author suffering from dystonia here.



I Have a Rare Disease And I Am Crossing Borders

Alan’s life was disrupted when he was diagnosed with a rare disorder called ataxia.

Read about how he used the challenging circumstances to create a support network here.


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

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We believe rare disease patients are people, not a diagnosis. Through education, awareness and some humor, we help patients, caregivers and support persons by providing relevant and often inspirational news and stories.
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