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Eurordis opened a campaign, called Rare 2030 Action, that is seeking to establish a European action plan for rare diseases to ensure that none of the 30 million people in Europe living with rare diseases are left behind by the start of a new decade. As part of…
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Ahead of this year’s Rare Disease Week on Capitol Hill, held virtually July 14–22, the EveryLife Foundation will award grants to top advocates of rare disease organizations who participate in the week’s pre-events. The top 50 point-earners will be eligible to win $1,000 to $5,000in grants, totaling up…
Treatment with Soliris (eculizumab) successfully prevented the recurrence of atypical hemolytic uremic syndrome (aHUS) in a 64-year-old woman who had received a kidney transplant, without compromising her recovery from COVID-19, a case study reports. The study, “COVID-19 in a kidney transplant recipient treated with eculizumab for…
The health and safety guidelines imposed during the pandemic were nothing new for rare disease patients, explains columnist Annie Dixon.
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