HLH News

October 22, 2020October 22, 2020

Telehealth ‘Helpful’ Alternative to In-person Care, Rare Disease Patients Say

COVID-19 News, HLH News

A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, and many would like the option of continuing its use in future appointments, a series ... Read more

August 27, 2020September 27, 2020

Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input

HLH News

Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed at streamlining the search for new medicines for rare disorders and incorporating more patient input ... Read more

August 20, 2020September 20, 2020

EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US

HLH News

The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare disorders who are pursuing personal goals through training and education. The ... Read more

August 13, 2020September 13, 2020

New Streaming Channel Showcases Rare Disease Films

COVID-19 News, HLH News

When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated for May, its organizers set out to find a new way to bring the films ... Read more

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