ICYMI: Father Walked 1,200 miles Barefoot to Raise Money for Gene Therapy to Treat His Daughter’s CdLS

In August 2021 News Center Maine ran an article introducing former British army Major Chris Brannigan. Brannigan, forty-one years old, was prepared to do anything to help his daughter Hasti,…

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Compassion Corner: Technology Cannot Replace the Gentle Words Spoken by a Nurse or Doctor When a Patient is in Excruciating Pain
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Compassion Corner: Technology Cannot Replace the Gentle Words Spoken by a Nurse or Doctor When a Patient is in Excruciating Pain

Compassion [kuhm-pash-uhn] noun A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering. Compassion Corner is a…

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“Pink” Urine Helps Diagnose Acute Hepatic Porphyria
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“Pink” Urine Helps Diagnose Acute Hepatic Porphyria

When a 23-year-old woman, who was 6 weeks pregnant, first appeared at the doctor, she was presenting with non-specific symptoms: pale eyelids, abdominal pain, intermittent cramping, and generalized arm and…

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Autoantibody Treatments Show Promise for Chronic Fatigue Syndrome
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Autoantibody Treatments Show Promise for Chronic Fatigue Syndrome

The 2nd Virtual Scientific Conference for the International Association for Chronic Fatigue Syndrome/ Myalgia Encephalomyelitis was recently held in August 2021. This conference was a place for researchers to present work which…

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Doctors Explain How To Assess Chronic Kidney Disease Staging for Patients
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Doctors Explain How To Assess Chronic Kidney Disease Staging for Patients

Dr. Bakris, Dr. Agarwal, Dr. Wright, and Dr. Minkoff have recently come together to discuss how they assess kidney function and ultimately diagnose chronic kidney disease (CKD). Assessing Disease Severity…

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RDLA Virtual Rare Disease Congressional Caucus Briefing: The Future of Newborn Screening
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RDLA Virtual Rare Disease Congressional Caucus Briefing: The Future of Newborn Screening

On October 25, 2021, Rare Disease Legislative Advocates (RDLA) held a virtual briefing for the Rare Disease Congressional Caucus. The subject of this briefing was newborn screening and ongoing discussions…

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