Mary Chapman, features writer —

The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand how the COVID-19 outbreak is affecting people with rare diseases, their families, and caregivers. Survey questions cover a patient’s physical and mental health, supply of treatments, and access to healthcare, among other…

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. Called the NORD COVID-19 Critical Relief Program, the effort will provide up to $1,000 annually to those eligible to…

After demonstrating an ability to deliver top-shelf care to patients with pulmonary hypertension (PH), four sites have been added to the Pulmonary Hypertension Association’s (PHA) network of Centers of Comprehensive Care (CCC). The newly accredited centers are the Cleveland Clinic in Ohio, Tufts…

Beginning on Feb. 29, Rare Disease Day, chapters from notable scientific books and clinical review articles covering rare disorders will be available free-of-charge from Elsevier. The offer runs through April 30, and aims to supports work by researchers and clinicians into a better understanding of and treatments for rare diseases, as well…

An abundance of events are afoot around the world to mark Rare Disease Day 2020 on Feb. 29. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…

Seeking to further advance research into treatments for pulmonary hypertension (PH), the nonprofit Team PHenomenal Hope is now accepting submissions for its research award program. Called the PHenomenal Impact Fund for Global PH Research, the program supports investigations in basic or translational science, clinical research, and clinical…

The newly founded Pulmonary Wellness Foundation recently launched its interactive online 2020 Lecture Series, covering an array of topics related to respiratory health for patients, caregivers, family members, and clinicians. The free webinars are presented at 7 p.m. EST every Wednesday by the nonprofit and its founder, cardiopulmonary…

November is Pulmonary Hypertension Awareness Month, and this year, the Pulmonary Hypertension Association (PHA) is highlighting risk factors and symptoms associated with the disease. PHA’s social media campaign, titled “PHaces of Hope,” is based on stories from pulmonary hypertension (PH) patients and their caregivers, as well…

To help those with heart and circulatory disorders live longer and better lives, the British Heart Foundation (BHF) has awarded the University College London (UCL) a £1 million grant (about $1.28 million) over five years. Specifically, funding from the BHF Research Accelerator Award will help UCL build a…

The Pulmonary Hypertension Association (PHA) has named Loma Linda University Health California’s first accredited pulmonary hypertension (PH) medical center. Loma Linda is now one of the nation’s 12 accredited regional clinical programs, as established by the association’s PH Care Center initiative to raise the overall quality of care…

Online forums have markedly altered how patients, caregivers, and healthcare professionals communicate and connect. Even when miles apart, people can establish supportive relationships, share experiences and information, and sometimes simply vent. Bionews Services, a leading online health, science, and research publication company, has been rolling out…

As they have for the past five years, members of the pulmonary hypertension (PH) community are preparing to participate in PHenomenal Hope 5K, an event established to raise disease awareness and research funds for Team PHenomenal Hope. Held this year on April 27, the flat-course event will begin and…