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Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients
People with rare disorders have a worse healthcare experience than those affected by chronic diseases, ...
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Pandemic Won’t Stop Rare Disease Day on Feb. 28
Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 ... -
NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns
While progress was made last year on newborn screening and other policy issues critical to ... -
COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say
The two COVID-19 vaccines that recently received emergency approval from the U.S. and other worldwide ... -
NORD’s Caregiver Respite Program Continues Through Pandemic
Caring for a loved one with a rare disease, especially during these uncertain times, demands ... -
NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum
The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences ... -
NORD Push for Rare Disease Advisory Councils Focus of Dec. 16 Public Meeting
To empower and equip members of the rare disease community to engage state leaders in ... -
Survey Finds COVID-19 Disrupted Care, Well-Being of Rare Disease Patients in Europe
The first wave of COVID-19 in Europe severely disrupted access to care and raised stress and ... -
Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry
Leaders in the U.S. rare disease community came together recently for a webinar to present ... -
NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits
The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of ... -
UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner
A photo of a bespectacled young boy, his red baseball cap slightly askew as he ... -
Telehealth ‘Helpful’ Alternative to In-person Care, Rare Disease Patients Say
A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, ... -
Same But Different Asks Public to Vote on ‘Glimmer of Hope’ Calendar Photos
Same But Different, a nonprofit U.K. group that uses art for social change, is inviting ... -
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 ... -
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 ... -
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 ... -
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 ... -
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 ... -
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 ... -
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 ...