HLH News

December 3, 2020January 4, 2021

NORD Push for Rare Disease Advisory Councils Focus of Dec. 16 Public Meeting

HLH News

To empower and equip members of the rare disease community to engage state leaders in matters of importance to patients and their families, the National Organization for Rare Disorders (NORD) ... Read more

November 26, 2020December 28, 2020

Survey Finds COVID-19 Disrupted Care, Well-Being of Rare Disease Patients in Europe

COVID-19 News, HLH News

The first wave of COVID-19 in Europe severely disrupted access to care and raised stress and anxiety in people with rare diseases, negatively affecting their health and well-being, according to a ... Read more

November 19, 2020December 20, 2020

Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry

HLH News

Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how to start a nonprofit and patient registry. They shared about how ... Read more

November 5, 2020December 7, 2020

NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits

HLH News

The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of free virtual workshops in December, with the aim of empowering leaders to start non-profit organizations ... Read more

October 29, 2020November 30, 2020

UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner

HLH News

A photo of a bespectacled young boy, his red baseball cap slightly askew as he  enjoys time outside, will be featured on the front cover of an upcoming calendar in ... Read more

October 22, 2020January 3, 2021

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

October 8, 2020November 8, 2020

Same But Different Asks Public to Vote on ‘Glimmer of Hope’ Calendar Photos

COVID-19 News, HLH News

Same But Different, a nonprofit U.K. group that uses art for social change, is inviting people to choose their favorite photographs in a calendar contest to heighten awareness of rare diseases, ... Read more

September 3, 2020November 6, 2020

Same But Different Photo Contest Celebrates People With Rare Diseases

HLH News

Same But Different, a U.K. nonprofit that uses the arts to bring communities together, is holding a calendar photography competition to raise awareness for rare diseases. Under the theme “A ... 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 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