Pediatric gastroenterologist Dr. Henry Lin describes growth, nutritional, and psychosocial considerations for clinicians managing patients with ALGS.
Dr. Henry Lin reviews common clinical presentations and management considerations for renal, skeletal, ocular, and vascular involvement in ALGS.
Pediatric gastroenterologist Henry Lin, MD, MBA, reviews how the liver and cardiac system are involved in Alagille syndrome.
Kristen Baugher knew shortly after giving birth to her daughter, Emmery, that something was wrong. Jaundiced and weak, the baby itched uncontrollably.
When it comes to rare disorders, Israel—a New Jersey-sized nation of 9.3 million that’s made headlines this year for its highly successful coronavirus vaccination campaign—is clearly an emerging powerhouse.
In August of 2003, Roberta Smith of East Tawas, Michigan, gave birth to twin daughters. It was immediately obvious that one of the girls, Cloe, was seriously ill. Jaundiced and plagued by incessant itching, the infant was diagnosed with Alagille syndrome 2 weeks later. Cloe’s disease is exceedingly rare, affecting roughly 1 in 30,000 to…
Although we are making headway in understanding and treating people living with Alagille Syndrome (ALGS) — a rare genetic disorder that manifests in a variety of ways — several questions remain. Here, Henry C. Lin, MD, pediatric gastroenterologist in the Division of Gastroenterology at Doernbecher Children’s Hospital, Oregon Health & Science University, shares his perspective…
Under COVID-19’s lingering shadow, the National Organization of Rare Disorders (NORD) has presented its 2021 Rare Impact Awards to 24 pharmaceutical firms, researchers, politicians, and nonprofit groups for their efforts over the past year on behalf of patients with such illnesses.
As the super-contagious Delta variant of COVID-19 sweeps across the globe, driving up infection rates as well as deaths, top US health officials are urging everyone 12 and older—including the country’s 30 million or so rare disease patients—to get vaccinated quickly.