Why now more than ever?

When an orphan disease is sent back in time


In the past two weeks, treatment of hypoparathryodism has been sent back in time.

the only of its kind on the market drug to manage the symptoms of hypoparathyroidsm through a daily inject-able synthetic hormones was recalled by its maker due to packaging issues. While, it is obvious this needed to be fixed, this is an example showing how fragile having a rare disease is. All patients on the drug are scrambling with their doctors and insurance to go back to oral meds or get off label solutions okayed. According to anecdotes, a little under 40 people have been to the ER and some to the ICU as they deal with their new reality. We need more options than to have a packaging issue detail lives.

Help us work towards something new.



This video is owned and created by Shire. We are not affiliated with Shire, but appreciate their great video in explaining hypoparathyroidism