HLH News

July 30, 2020July 30, 2020

B-cell Lymphomas May Underlie HLH Development in Rare Cases, Report Shows

HLH News

Although rare, B-cell lymphomas may be the underlying cause of hemophagocytic lymphohistiocytosis (HLH), and complete remission may be achieved with chemotherapy regimens containing etoposide and steroids, a case report finds. The study, “A rare ... Read more

July 9, 2020August 9, 2020

National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US

HLH News

The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease Survey to measure the full implications, economic and social, of living with rare disease in ... Read more

June 23, 2020July 24, 2020

Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

COVID-19 News, HLH News

The Alexion Charitable Foundation has awarded $1.1 million in grants to programs that support those with rare diseases during the COVID-19 pandemic, the organization recently announced. The grants will support ... Read more

June 10, 2020July 11, 2020

Coalition Will Address Racial Disparities in Rare Disease Communities

COVID-19 News, HLH News

The Black Women’s Health Imperative (BWHI) recently created a Rare Disease Diversity Coalition focused on reducing racial disparities in the rare disease community. Getting a timely and accurate diagnosis for ... Read more

May 28, 2020June 28, 2020

COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say

COVID-19 News, HLH News

While the ongoing COVID-19 pandemic won’t have much of an impact on cash available for new biotech startups, it has begun to cause delays in the development of gene therapies ... Read more

May 25, 2020June 25, 2020

Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

HLH News

European authorities must step up efforts to screen babies for a multitude of genetic disorders, a panel of experts suggested during a May 14-15 online medical conference. The session was ... Read more

May 21, 2020June 21, 2020

Video Games Connect Chronically Ill Children Isolated at Home, Hospital

COVID-19 News, HLH News

Dara Riva always had a rule that her 10-year-old son could play video games only once a week. But then the COVID-19 pandemic struck, and her perspective changed. Riva’s son, ... Read more

May 19, 2020June 19, 2020

Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

COVID-19 News, HLH News

Eurordis, a Paris-based coalition of national rare disease associations across Europe, hosted its first all-virtual conference, bringing some 1,500 delegates from 57 countries together online during the COVID-19 pandemic. The ... Read more

May 12, 2020June 13, 2020

Rare Diseases Clinical Research Network Opens Online Survey on COVID-19

COVID-19 News, HLH News

The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand how the COVID-19 outbreak is affecting people with rare diseases, their families, and caregivers. Survey ... Read more

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