Mary Chapman, features writer —

Patients, caregivers, family members, and friends are set to mark Pulmonary Hypertension Awareness Month, observed each November to call attention to the complex, chronic, progressive disorder. Awareness and education are vital to heightening the recognition, diagnosis, understanding, and management of pulmonary hypertension (PH), a disease associated with high blood…

The PAH Today National Broadcast Series, created to help adults and their caregivers in the U.S. cope with pulmonary arterial hypertension (PAH), returns with two discussions for this year. Presented by the PAH Initiative and sponsored by United Therapeutics, the series offers views on contemporary approaches to managing…

When Zac Gunn was diagnosed with pulmonary hypertension (PH) three years ago, he was in very poor shape. But he rallied, astounding his medical team with his resilience and zest for life. And recently, the 4-year-old, who is awaiting a lung transplant, went on stage to receive the Child…

Seven members of the pulmonary hypertension (PH) community — ranging from an 11-year-old advocate diagnosed in infancy to a physician who has led clinical trials, to a longtime fundraiser who’s a retired teacher — have been honored for their dedication and service by the Pulmonary Hypertension Association (PHA).

At its first virtual investor event, biotech company Centogene set a bold mission: to cure 100 rare diseases within the next decade. A leader in the field of genetic diagnostics, Centogene used the June 22 event to present its strategic priorities, outlining its plans to speed the discovery…

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,…

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a presentation by a Nobel laureate recently recognized for her work on a gene editing tool. The free, virtual…

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. 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 and…

While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “State Report Card” argues that many concerns — notably out-of-pocket costs for prescription medicines and access to affordable comprehensive care — still need attention. Those were the findings of the…

Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a…

The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to speak at its upcoming virtual Living Rare, Living Stronger NORD Patient and Family Forum. The interactive, patient-focused forum will be held online June 26-27. The deadline to apply for…