News

April 24, 2020April 28, 2020

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

News, syndicated

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 ... Read more

April 22, 2020April 22, 2020

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

News, syndicated

The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in rare disease community who are affected by the COVID-19 pandemic in the U.S. ... Read more

April 15, 2020April 15, 2020

Soliris Helps Prevent aHUS Relapses During Pregnancy, Case Report Suggests

News

Treatment with Soliris (eculizumab) during pregnancy may help prevent subsequent relapses of pregnancy-associated atypical hemolytic uremic syndrome (aHUS), according to a case report. The report, “Eculizumab Maintenance and the Prevention ... Read more

April 8, 2020April 2, 2020

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

News

First, the bad news: If you’re one of the 30 million or so Americans with a rare disease, you probably have lower immunity to the novel coronavirus than most ... Read more

April 1, 2020March 26, 2020

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

News

The Living Rare, Living Stronger Patient and Family Forum, originally set for May 14–16 in Cleveland, Ohio, has been postponed until July 18–20 because of the coronavirus disease COVID-19 pandemic. ... Read more

March 25, 2020March 25, 2020

Tekturna Seen to Treat High Blood Pressure Associated with aHUS

News

A medication for high blood pressure, Tekturna (aliskiren) may be used as an add-on therapy to manage hypertension associated with atypical hemolytic uremic syndrome (aHUS) until more adequate treatments become available, ... Read more

March 23, 2020March 23, 2020

aHUS Can Arise Following Aortic Dissection, Case Study Says

News

Atypical hemolytic-uremic syndrome can arise following an aortic dissection — a serious condition in which the inner layer of the aorta tears open — according to a new case ... Read more

March 23, 2020March 23, 2020

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

Just Published, News

Even with the coronavirus pandemic ravaging Europe and much of the world, patient advocate Lucia Monaco, PhD, of Italy remains confident that the Paris-based nonprofit she chairs will see ... Read more

March 16, 2020March 16, 2020

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

News

Bexsero, a vaccine developed as a treatment for serogroup B meningococci — the bacteria that can cause meningitis — is only effective in 50% of people with atypical hemolytic ... Read more

March 9, 2020March 9, 2020

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

News

The number of treatments for children with rare diseases has grown over the past decade, according to a new study. However, despite the increase, nearly 7,000 rare diseases are still ... Read more

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