News

NORD Honors Industry, Patient Advocates at Rare Impact Awards Gala

A violinist with vasculitis, two Texas politicians and a pharmaceutical company whose marijuana-derived therapy helps kids with Dravet syndrome were among winners of the 2019 Rare Impact Awards. Officials of the National Organization for Rare Disorders (NORD) presented the awards during a June 22 dinner attended by…

Eurordis Unveils Integrated-care Initiative for Rare Disease Patients

Europe’s umbrella organization for 800 rare disease associations has developed a sweeping initiative to help the continent’s 30 million rare disease patients and their caregivers learn about their conditions, find assistance and receive treatment. Eurordis-Rare Diseases Europe hopes to improve the current piecemeal treatment and support program with a holistic,…

Pulmonary Hypertension Therapies May Help Heart Conditions in Certain Sarcoidosis Patients, Study Suggests

While there no therapies approved for sarcoidosis-associated pulmonary hypertension (SAPH), pulmonary hypertension-specific therapies may help ease right heart dysfunction in a select group of patients, according to results of a large cohort study. The study, “Clinical Features and Outcomes of Patients with Sarcoidosis-associated Pulmonary Hypertension,” was published in…

SCMR Promotes Heart MRIs During National Sarcoidosis Awareness Month

During April, National Sarcoidosis Awareness Month, the Society for Cardiovascular Magnetic Resonance (SCMR) is promoting the use of cardiac imaging to non-invasively assess changes in patients’ heart tissue and overall cardiac function. Sarcoidosis is marked by an overreactive immune system and the resulting formation of small clumps of inflammatory…