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The European Commission is expected to propose a new governing framework for health data next month, called the European Health Data Space (EHDS), with the aim of connecting national health systems to facilitate secure and efficient transfer of data across systems in different European nations. The move is expected to…
The National Organization for Rare Disorders (NORD) has updated its State Report Card to make it more digitally friendly and added telehealth to its categories of rare disease policy issues in a nod to its increased use during the ongoing COVID-19 pandemic. NORD’s report card project began seven…
The Foundation for Sarcoidosis Research (FSR) is searching for volunteers to join its advocacy program, designed to support the sarcoidosis community in a number of ways, from raising awareness to coaching other advocates to providing one-on-one support to patients and caregivers. The program consists of three advocate roles:…
Sarcoidosis patients are invited to share their stories, fundraise, and attend a variety of events this April to celebrate Sarcoidosis Awareness Month. An estimated 1.2 million people across the globe live with sarcoidosis, an inflammatory disease with no known cure. Nearly 175,000 of these people are thought to…
Having an ultrasound of the neck may be useful for diagnosing certain cases of sarcoidosis — and for ruling out other similar conditions, a new study highlights. In fact, statistical models based on ultrasound measures used in the study were shown to accurately identify 90% of patients with and…
Patient registries are a hot topic of rare disease research and many organizations are taking advantage of this resource by signing up their patient communities and connecting with researchers. Eric Sid, MD, program officer for the Office of Rare Diseases Research (ORDR), said it is difficult to estimate how…
aTyr Pharma has received positive feedback from the U.S. Food and Drug Administration (FDA) in a meeting to discuss the regulatory development of its lead candidate, efzofitimod (ATYR1923), for the treatment of pulmonary sarcoidosis. After a review of data provided by aTyr, including results from a recently completed…
Horizon Therapeutics has launched its #RAREis Representation program aimed at increasing diversity, equity, and inclusion among patients with rare diseases. There are about 400 million people worldwide living with a rare disease; for many of them, access to diagnosis, care, and treatments can be challenging. Accessing better care depends on…
The Foundation for Sarcoidosis Research (FSR) is now accepting applications for fellowships supporting early career clinicians and researchers focused on sarcoidosis. The deadline is March 15, the foundation announced. The two-year grants will provide a total of $150,000 to selected fellows, with…
BioNews, the publisher of this website, hosted a virtual panel discussion on Rare Disease Day 2022, taking a deeper dive into what it’s like to live with a rare disease, including conversations about advocacy, mental health, survivor’s guilt, treatment of minority patients, and more. The Monday event, “A…
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