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.
When Sandra’s son, Tony, was diagnosed with a rare condition called ADNP syndrome, she set out on a mission.
Check it out here.
Our patient contributor Amy is back, with the second half of her acromegaly journey.
Read more about it here.
Check out these wise words from a life coach and author suffering from dystonia here.
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.