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.
