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The Inflation Reduction Act: The Devil is in the Details for Patients with Rare Diseases
David Gibson, PhD, CMPP Director of Strategic Programs, Engagement, and Communications Amyloidosis Research Consortium The Inflation Reduction Act (IRA), signed into law on August 16, 2022, tackled a wide range of issues from tax reform, energy security, environmental and agricultural protection, all the way to climate change. The world of health care was not left untouched, and the IRA included specific efforts to reduce the prices of prescription drugs – an effort with obvious wide-spread support across families in...
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The Transthyretin Amyloidosis – Quality of Life (ATTR-QOL) Questionnaire: Development of a Conceptual Model and Disease-Specific Patient-Reported Outcome Measure
O'Connor, Hsu, Broderick, McCausland, LaGasse, Rebello, Carty, Lousada (2023)
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Autologous Stem Cell Transplants in AL Amyloidosis
The Autologous stem cell transplant (ASCT) procedure has been used as a treatment option for AL patients for several years. Eligible patients undergo the process of stem cell collection, high-dose chemotherapy, and transplantation of the healthy stem cells back into the body. This process can be quite challenging for patients, as the body undergoes a complete immune system wipe out and regeneration. The purpose of this booklet is to provide insight into the process, including tips and recommendations for preparation.
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