Updates

May 27, 2020May 27, 2020
Ultomiris Safe, Effective at Resolving Life-threatening Complications of aHUS, Trial Results Show

Ultomiris (ravulizumab-cwvz) is safe and effective at resolving acute and life-threatening complications of atypical hemolytic uremic syndrome (aHUS) in adults with thrombotic microangiopathy (TMA), ... Read more
May 25, 2020May 25, 2020
Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

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 ... Read more
May 21, 2020May 21, 2020
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 once a week. But then the COVID-19 pandemic struck, ... Read more
May 20, 2020May 20, 2020
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 conference, bringing some 1,500 delegates from 57 countries together ... Read more
May 18, 2020May 18, 2020
How Might aHUS Affect my Heart?

Atypical hemolytic uremic syndrome (aHUS) is a rare disease that affects the kidneys by causing abnormal blood clots to form in the kidneys’ small ... Read more

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Updates

Ultomiris Safe, Effective at Resolving Life-threatening Complications of aHUS, Trial Results Show

Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

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

How Might aHUS Affect my Heart?

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

How to Deal with aHUS Attacks

CHMP Favors Ultomiris to Treat Children and Adults with aHUS in EU

FAQs About Dialysis in aHUS

NORD Webinar Outlines COVID-19 Response on Financial, Policy Fronts

Industry leaders seek to advance innovative resources for rare and orphan disease communities amid COVID-19 outbreak

Subscribe to our mailing list

Surge in Telemedicine One ‘Good’ Outcome from COVID-19 Crisis, Doctors Say

What Types of Dialysis Are Given to People with aHUS?

NORD Opens COVID-19 Financial Aid Program for Rare Disease Community

Soliris Helps Prevent aHUS Relapses During Pregnancy, Case Report Suggests

aHUS and Pregnancy

NORD’s Advice on COVID-19: You’re Stronger Than You Think

Is aHUS Genetic?

NORD Partners with ‘Sing Me a Story’ for July 18–20 Living Rare Forum

Dealing with Shortness of Breath When You Have aHUS

Tekturna Seen to Treat High Blood Pressure Associated with aHUS

aHUS Can Arise Following Aortic Dissection, Case Study Says

Global Rare Disease Group’s Focus: 1,000 New Therapies by 2027, Despite COVID-19

Bexsero Vaccine Against MenB Bacteria Only Effective in 50% of aHUS Patients, Study Finds

Pediatric Rare Disease Therapies Increase, But Most Repurposed, Study Finds

New aHUS-Causing Mutations Found in DGKE Gene in Chinese Patient, Report Says

Elsevier Opens Books, Review Articles to Rare Disease Researchers Starting Feb. 29

How Does aHUS Differ from Other Thrombotic Microangiopathies?

Advice on Starting Nonprofit Groups for Rare and Other Diseases Focus of NORD Webinar

Advances in Diagnosis, Disease Characterization Needed in Canada to Improve aHUS Outcomes, Registry Study Suggests

Patients, Supporters Worldwide Recognizing Rare Disease Day 2020

Patients Suspected of Having aHUS Should be Treated With Soliris Immediately, Case Study Suggests

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Ultomiris Safe, Effective at Resolving Life-threatening Complications of aHUS, Trial Results Show

Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

Video Games Connect Chronically Ill Children Isolated at Home, Hospital

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

How Might aHUS Affect my Heart?

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

How to Deal with aHUS Attacks

CHMP Favors Ultomiris to Treat Children and Adults with aHUS in EU

FAQs About Dialysis in aHUS

NORD Webinar Outlines COVID-19 Response on Financial, Policy Fronts

Industry leaders seek to advance innovative resources for rare and orphan disease communities amid COVID-19 outbreak

Subscribe to our mailing list

Surge in Telemedicine One ‘Good’ Outcome from COVID-19 Crisis, Doctors Say

What Types of Dialysis Are Given to People with aHUS?

NORD Opens COVID-19 Financial Aid Program for Rare Disease Community

Soliris Helps Prevent aHUS Relapses During Pregnancy, Case Report Suggests

aHUS and Pregnancy

NORD’s Advice on COVID-19: You’re Stronger Than You Think

Is aHUS Genetic?

NORD Partners with ‘Sing Me a Story’ for July 18–20 Living Rare Forum

Dealing with Shortness of Breath When You Have aHUS

Tekturna Seen to Treat High Blood Pressure Associated with aHUS

aHUS Can Arise Following Aortic Dissection, Case Study Says

Global Rare Disease Group’s Focus: 1,000 New Therapies by 2027, Despite COVID-19

Bexsero Vaccine Against MenB Bacteria Only Effective in 50% of aHUS Patients, Study Finds

Pediatric Rare Disease Therapies Increase, But Most Repurposed, Study Finds

New aHUS-Causing Mutations Found in DGKE Gene in Chinese Patient, Report Says

Video: BioNews’ Social Media Campaign Highlights #WhatMakesMeRare

Elsevier Opens Books, Review Articles to Rare Disease Researchers Starting Feb. 29

How Does aHUS Differ from Other Thrombotic Microangiopathies?

Advice on Starting Nonprofit Groups for Rare and Other Diseases Focus of NORD Webinar

Advances in Diagnosis, Disease Characterization Needed in Canada to Improve aHUS Outcomes, Registry Study Suggests

Patients, Supporters Worldwide Recognizing Rare Disease Day 2020

Patients Suspected of Having aHUS Should be Treated With Soliris Immediately, Case Study Suggests

Pin It on Pinterest