HLH News

April 30, 2020April 30, 2020

Disruptive Germline Variants Do Not Drive Adult-onset HLH, Study Suggests

HLH News

Germline variants — genetic mutations found in sperm or eggs that can be passed down to offspring — associated with hemophagocytic lymphohistiocytosis (HLH) are not more prevalent in patients with ... Read more

April 29, 2020June 1, 2020

Surge in Telemedicine One ‘Good’ Outcome from COVID-19 Crisis, Doctors Say

COVID-19 News, HLH News

While there are few silver linings to the cloud created by COVID-19, the pandemic that has killed tens of thousands, hobbled economies worldwide and drove millions to quarantine in their ... Read more

April 23, 2020June 1, 2020

NORD Opens COVID-19 Financial Aid Program for Rare Disease Community

COVID-19 News, HLH News

The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in rare disease community who are affected by the COVID-19 pandemic in the U.S. Called ... Read more

April 16, 2020April 16, 2020

Multidisciplinary Teamwork Needed to Improve HLH Prognosis in Adults, Study Says

HLH News

A highly cooperative multidisciplinary approach is crucial to improve the prognosis of adults with hemophagocytic lymphohistiocytosis (HLH), a study says. The study, “Hemophagocytic lymphohistiocytosis in adults: collaborative analysis of 137 ... Read more

April 9, 2020April 9, 2020

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

HLH News

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 2, 2020April 2, 2020

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

HLH News

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 25, 2020May 15, 2020

Global Rare Disease Group’s Focus: 1,000 New Therapies by 2027, Despite COVID-19

COVID-19 News, HLH News

Even with the coronavirus pandemic ravaging Europe and much of the world, patient advocate Lucia Monaco, PhD, of Italy remains confident that the Paris-based nonprofit she chairs will see the ... Read more

March 19, 2020March 21, 2020

HLH Triggered by Septicemia in Young Boy with Immune Deficiency

HLH News

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 21, 2020

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

HLH News

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 10, 2020March 21, 2020

Pediatric Rare Disease Therapies Increase, But Most Repurposed, Study Finds

HLH News

The number of treatments for children with rare diseases has grown over the past decade, according to a new study. However, despite the increase, nearly 7,000 rare diseases are still lacking ... Read more

March 6, 2020March 21, 2020

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

HLH News

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 21, 2020

Video: BioNews’ Social Media Campaign Highlights #WhatMakesMeRare

HLH News

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

March 3, 2020March 21, 2020

Elsevier Opens Books, Review Articles to Rare Disease Researchers Starting Feb. 29

HLH News

Beginning on Feb. 29, Rare Disease Day, chapters from notable scientific books and clinical review articles covering rare disorders will be available free-of-charge from Elsevier. The offer runs through April 30, and ... Read more

February 27, 2020March 21, 2020

Advice on Starting Nonprofit Groups for Rare and Other Diseases Focus of NORD Webinar

HLH News

Starting a 501(c)(3) tax-exempt nonprofit isn’t easy, but the National Organization for Rare Disorders gave a few tips for those  looking to begin the complex process in its Feb. 20 ... Read more

February 20, 2020March 21, 2020

Patients, Supporters Worldwide Recognizing Rare Disease Day 2020

HLH News

An abundance of events are afoot around the world to mark Rare Disease Day 2020 on Feb. 29. The activities are focused on heightening awareness about rare diseases and the ... Read more