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Update from the Board

Yesterday some of The Hypoparathyroidism Association board members had the opportunity to meet with Ramona Sequeira (President of Takeda US), Laura Cline (Vice President of Therapeutic Policy & Advocacy) and Elizabeth Stoltz (Director, Therapeutic Policy & Advocacy, Rare Disease). Although there is no new information at this time, Takeda is working continuously with FDA to evaluate all options- short and long term- to address the safety concerns associated with the Natpara recall. Both Takeda and FDA acknowledge the difficulties that many patients are experiencing due to the discontinuation of Natpara and they are committed to resolving this recall as soon as possible. We understand that the lack of public information may be frustrating, but we can assure you that every option is being considered. We may be a small community, but we are Takeda's #1 priority right now and they are doing everything they can to bring Natpara back to us.

This recall really highlights the benefit of Natpara and the improved quality of life it brings to many patients. The implications of this recall have been profound and it has really shed a light on gaps that still exist in treatment of hypoparathyroidism.

We know this has been a difficult journey for some of our members, but rest assured that The Hypoparathyroidism Association is here for you. We are committed to supporting the needs of the community as a whole and of each individual patient. We will continue to keep you informed as new information is available. Right now, the hypopara community must work together and help each other in our times of need.  In the words of James Sanders, the founder of the Association "You are not alone! Together we can do this!”

 

The HypoPARAthyroidism Association Board of Directors

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