uncategorized

April 9, 2020April 9, 2020

Blood Levels of Ferritin Post-Treatment May Predict Survival in Adults

uncategorized

The amount of ferritin, a protein that stores iron, in the blood after treatment for hemophagocytic lymphohistiocytosis (HLH) may help predict outcomes for adult patients, regardless of the underlying cause ... Read more

April 6, 2020April 6, 2020

NORD’s Advice on COVID-19: You’re Stronger Than You Think

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First, the bad news: If you’re one of the 30 million or so Americans with a rare disease, you probably have lower immunity to the novel coronavirus than most people. ... Read more

April 2, 2020April 2, 2020

Immunosuppressive, Anakinra, Seen to Help Treat Secondary HLH in Children

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An immunosuppressive medication, anakinra appears effective in treating secondary hemophagocytic lymphohistiocytosis (sHLH) in children, particularly when patients have underlying rheumatic disease and no evidence of cancer. The study, “Benefit of Anakinra ... Read more

March 26, 2020April 26, 2022

NORD Partners with ‘Sing Me a Story’ for July 18–20 Living Rare Forum

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The Living Rare, Living Stronger Patient and Family Forum, originally set for May 14–16 in Cleveland, Ohio, has been postponed until July 18–20 because of the coronavirus disease COVID-19 pandemic. The ... Read more

March 19, 2020March 20, 2020

HLH Triggered by Septicemia in Young Boy with Immune Deficiency

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Hemophagocytic lymphohistiocytosis (HLH) should be suspected in cases of chronic granulomatous disease (CGD) with a documented infection, according to a recent case report. The case involved a 3-year-old boy who ... Read more

March 12, 2020March 12, 2020

Patient Creates Foundation to Raise Awareness About HLH, Other Rare Diseases

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One patient’s personal battle with the rare disease hemophagocytic lymphohistiocytosis (HLH) has evolved into a new organization, the Eric’s Journey Foundation, to raise awareness about individuals with HLH and other ... Read more

March 6, 2020March 6, 2020

1st Case of Cancer Patient Developing HLH While on Keytruda Reported

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In a first known occurrence, a man developed hemophagocytic lymphohistiocytosis (HLH) while being treated with the immunotherapy agent Keytruda (pembrolizumab) for metastatic head and neck squamous cell carcinoma (HNSCC), a case study reported. ... Read more

March 5, 2020March 6, 2020

Video: BioNews’ Social Media Campaign Highlights #WhatMakesMeRare

News, uncategorized

In recognition of Rare Disease Day Feb. 29, BioNews Services launched a social media campaign last month asking patients to describe what makes them rare. Running Feb. 7–29, the #WhatMakesMeRare ... Read more

February 13, 2020February 13, 2020

HLH Should Be Considered as Possible Complication After Invasive Pneumococcal Disease, Case Report Suggests

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The case of a Japanese infant who developed hemophagocytic lymphohistiocytosis (HLH) secondary to a bacterial infection highlights the need to consider HLH as a possible complication in such infections — ... Read more

February 6, 2020February 6, 2020

Woman With Glioblastoma Develops HLH Likely From Epstein-Barr Virus Infection and Cancer Treatment, Case Study Says

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Physicians in a recent study described the case of a woman who developed hemophagocytic lymphohistiocytosis (HLH) while receiving treatment for glioblastoma, an aggressive type of brain cancer, most likely triggered ... Read more