The Hypoparathyroidism Association met with a senator's office this afternoon and we had an excellent discussion about the hypoparathyroidism community! While the discussion was sparked by the Natpara recall, we used this as an opportunity to highlight a number of concerns that exist for those of us touched by hypoparathyroidism. We shared the ins and outs of hypopara, including causes, symptoms, treatments, gaps in research and information, difficulties patients have. And, of course, we spent a lot of time discussing the recall of Natpara, how it is impacting some hypopara patients and what can be done to help the community while the experts develop a plan to ensure the safety of Natpara. We discussed many possible ways in which legislative effort might have a positive impact during the recall and beyond. Nothing was agreed at this time, so we can't promise that anything on our "wish list" will come true, but we are very pleased to have had the opportunity to continue supporting the hypoparathyroidism community and we will keep moving forward no matter what the outcome! As always, we urge any patients who need assistance, support or information to communicate directly with The Association. Our volunteers are working around the clock to support you!
The Hypoparathyroidism Board of Directors