News

To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health information system, the EveryLife Foundation for Rare Diseases is presenting a first-of-its-kind resource guide. The foundation created the…

Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…

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…

A researcher investigating pathogens — disease-causing microorganisms — capable of causing neurosarcoidosis has been awarded $150,000 from the Foundation for Sarcoidosis Research (FSR). The FSR Sarcoidosis Research Fellowship Grant will provide Paula Barreras, MD, of the Johns Hopkins University Hospital, with two years of funding for her project. Titled…

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 $5,000 in grants, totaling…

African American women diagnosed with sarcoidosis or who have strong connections to the sarcoidosis community, are invited to apply to become members of the Women of Color Committee of the Foundation for Sarcoidosis Research (FSR). The FRS Committee aims to provide insight into a large-scale education and awareness…

A rare case of sarcoidosis affecting only the spleen was successfully diagnosed using tissue analysis, after imaging scans and lab tests failed, a case study reported. Sarcoidosis should be considered when multiple tumors in the spleen have been detected, the scientists recommended.  The…

People with severe and difficult-to-treat sarcoidosis can safely switch from Remicade (infliximab) or its biosimilar Inflectra, to another biosimilar called Flixabi and maintain similar clinical benefits, a study reports. Six months after switching, none of these patients had stopped…

Long before COVID-19 changed the world, organ transplant recipients were wearing masks to shield themselves from airborne threats. Immunosuppressive medicines, which often are a lifelong after a transplant, require these people to add an extra layer of protection against viruses as common as a cold or as dangerous as COVID. They…

The Foundation for Sarcoidosis Research (FSR) is holding a two-day virtual patient education summit focused on providing relevant medical content on sarcoidosis, patient and care-partner perspectives, and updates on current and future research in the field. To attend the summit, set for June 12–13, patients and caregivers can…