Growth and Nutrition Considerations in Managing Alagille Syndrome
Pediatric gastroenterologist Dr. Henry Lin describes growth, nutritional, and psychosocial considerations for clinicians managing patients with ALGS.
ALGS Features
Kidney, Skeletal, Eye, and Vascular Considerations in Managing Alagille Syndrome
Dr. Henry Lin reviews common clinical presentations and management considerations for renal, skeletal, ocular, and vascular involvement in ALGS.
Managing the Clinical Manifestations of ALGS: Hepatic and Cardiac Considerations
Pediatric gastroenterologist Henry Lin, MD, MBA, reviews how the liver and cardiac system are involved in Alagille syndrome.
Relieving the ‘Devastating’ Severe Itching Faced by Patients With Alagille Syndrome
Kristen Baugher knew shortly after giving birth to her daughter, Emmery, that something was wrong. Jaundiced and weak, the baby itched uncontrollably.
AATD Features, ALGS Features, CAD Features, CC Features, DMD Features, Features, GIST Features, HEM Features, IPF Features, LAL-D Features, LCFAOD Features, NMOSD Features, PAH Features, Pompe Features, SMA Features
Israel Emerges as Global Powerhouse in Rare Disease Research
TEL AVIV, Israel — On the 6th floor of Schneider Children’s Hospital in the Tel Aviv suburb of Petah Tikva, 30 children with Alagille syndrome and 2 with lysosomal acid lipase deficiency (LAL-D) receive specialized treatment from a trio of pediatric hepatologists. Across town, at Sheba Medical Center’s Edmond and Lily Safra Children’s Hospital, pediatric…
Alagille Syndrome Alliance Leads Fight to Treat Rare Liver Disease
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…
Where We Are in ALGS: A Pediatric Gastroenterologist’s Perspective
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…
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NORD Recognizes Progress in Fight Against Rare Disease With 2021 Rare Impact Awards
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. The virtual ceremony was hosted by John Whyte, MD, MPH, chief medical officer at WebMD, with commentary…
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FDA, CDC Urge COVID-19 Vaccines for Rare Disease Patients on NORD Webinar
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. Some 185 million people have been infected, and nearly 4…
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