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Same But Different Photo Contest Celebrates People With Rare Diseases
Same But Different, a U.K. nonprofit that uses the arts to bring communities together, is ...
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Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input
Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed ... -
EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US
The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to ... -
New Streaming Channel Showcases Rare Disease Films
When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated ... -
B-cell Lymphomas May Underlie HLH Development in Rare Cases, Report Shows
Although rare, B-cell lymphomas may be the underlying cause of hemophagocytic lymphohistiocytosis (HLH), and complete remission may be achieved ... -
National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US
The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease ... -
Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic
The Alexion Charitable Foundation has awarded $1.1 million in grants to programs that support those ... -
Coalition Will Address Racial Disparities in Rare Disease Communities
The Black Women’s Health Imperative (BWHI) recently created a Rare Disease Diversity Coalition focused on ... -
COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say
While the ongoing COVID-19 pandemic won’t have much of an impact on cash available for ... -
Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe
European authorities must step up efforts to screen babies for a multitude of genetic disorders, ... -
Video Games Connect Chronically Ill Children Isolated at Home, Hospital
Dara Riva always had a rule that her 10-year-old son could play video games only ... -
Unity and EU-wide Efforts Focus of Online Rare Disease Meeting
Eurordis, a Paris-based coalition of national rare disease associations across Europe, hosted its first all-virtual ... -
Rare Diseases Clinical Research Network Opens Online Survey on COVID-19
The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand ... -
Disruptive Germline Variants Do Not Drive Adult-onset HLH, Study Suggests
Germline variants — genetic mutations found in sperm or eggs that can be passed down ... -
Surge in Telemedicine One ‘Good’ Outcome from COVID-19 Crisis, Doctors Say
While there are few silver linings to the cloud created by COVID-19, the pandemic that ... -
NORD Opens COVID-19 Financial Aid Program for Rare Disease Community
The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people ... -
Multidisciplinary Teamwork Needed to Improve HLH Prognosis in Adults, Study Says
A highly cooperative multidisciplinary approach is crucial to improve the prognosis of adults with hemophagocytic ... -
Blood Levels of Ferritin Post-Treatment May Predict Survival in Adults
The amount of ferritin, a protein that stores iron, in the blood after treatment for ... -
Immunosuppressive, Anakinra, Seen to Help Treat Secondary HLH in Children
An immunosuppressive medication, anakinra appears effective in treating secondary hemophagocytic lymphohistiocytosis (sHLH) in children, particularly when ... -
Global Rare Disease Group’s Focus: 1,000 New Therapies by 2027, Despite COVID-19
Even with the coronavirus pandemic ravaging Europe and much of the world, patient advocate Lucia ... -
HLH Triggered by Septicemia in Young Boy with Immune Deficiency
Hemophagocytic lymphohistiocytosis (HLH) should be suspected in cases of chronic granulomatous disease (CGD) with a ... -
Patient Creates Foundation to Raise Awareness About HLH, Other Rare Diseases
One patient’s personal battle with the rare disease hemophagocytic lymphohistiocytosis (HLH) has evolved into a ... -
Pediatric Rare Disease Therapies Increase, But Most Repurposed, Study Finds
The number of treatments for children with rare diseases has grown over the past decade, according ... -
1st Case of Cancer Patient Developing HLH While on Keytruda Reported
In a first known occurrence, a man developed hemophagocytic lymphohistiocytosis (HLH) while being treated with the immunotherapy ... -
Video: BioNews’ Social Media Campaign Highlights #WhatMakesMeRare
In recognition of Rare Disease Day Feb. 29, BioNews Services launched a social media campaign ... -
Elsevier Opens Books, Review Articles to Rare Disease Researchers Starting Feb. 29
Beginning on Feb. 29, Rare Disease Day, chapters from notable scientific books and clinical review articles ... -
Advice on Starting Nonprofit Groups for Rare and Other Diseases Focus of NORD Webinar
Starting a 501(c)(3) tax-exempt nonprofit isn’t easy, but the National Organization for Rare Disorders gave ... -
Patients, Supporters Worldwide Recognizing Rare Disease Day 2020
An abundance of events are afoot around the world to mark Rare Disease Day 2020 ... -
HLH Should Be Considered as Possible Complication After Invasive Pneumococcal Disease, Case Report Suggests
The case of a Japanese infant who developed hemophagocytic lymphohistiocytosis (HLH) secondary to a bacterial ... -
FDA Efforts to Bring Patients into Treatment Decisions Focus of NORD Webinar
The U.S. Food and Drug Administration (FDA), a vast government bureaucracy, employs about 17,500 people ...