Saol Therapeutics and InformedDNA Partner to Offer Genetic Counseling to Patients with Rare Mitochondrial Disease

Program Discusses Access to a Pivotal Phase 3 Trial of Dichloroacetate in Pyruvate Dehydrogenase Complex Deficiency (DCA/PDCD trial; NCT02616484) Saol Therapeutics, a company researching new treatments for rare diseases, is pleased to announce a partnership with InformedDNA®, the nation’s leading applied genomics solutions company, to offer genetic counseling for the families of individuals with a…

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CMS Decision is an Enormous Setback for Alzheimer’s Patients and a Dangerous Infringement on FDA’s Scientific Autonomy

Patients will suffer because of this bureaucratic and unnecessary second-guessing of the FDA, says BIO CEO. Dr. Michelle McMurry-Heath, President and CEO of the Biotechnology Innovation Organization (BIO), released the following statement in response to the Centers for Medicare and Medicaid Services’ (CMS’s) National Coverage Determination (NCD) to restrict coverage for drugs used to treat…

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Stephanie and Christopher’s Story: Rare Disease and Medical Nutrition

Any parent would agree that having a child changes your world forever. Yet, having a child with a rare disease throws you not only into the role of parent but also advocate, educator, researcher, and medical provider. Those with rare diseases, and the guardians’ that care for them, have different perspectives on the world. We…

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Patient’s Corner: Living with Chronic Illness Vol. 3

By Dorothy Leone-Glasser Breast cancer survivors face many challenges while going through treatment and in post treatment.  They experience a wide range of physical, mental, emotional and spiritual pain. There are lingering side effects to treatment that are long term and can be hard to manage. Many times, the fear of what will happen is overwhelming.  Cancer…

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Patient’s Corner: Living with Chronic Illness Vol. 2

By Dorothy Leone-Glasser I met Mapillar Dahn and the MTS Sickle Cell Foundation, Inc. at our Rx in Reach GA Coalition Capitol Day. She was excited to participate in our event and had a table set to distribute Sickle Cell Awareness material and to engage visitors, attendees and legislators on the challenges of living with…

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