Mary Chapman, features writer —

A portrait of Morgan McKillop, a pre-teen who has erythropoietic protoporphyria (EPP) and is an active member of the American Porphyria Foundation (APF), has been chosen to be a part of an art gallery of faces representing rare diseases. McKillop’s image, which is done in muted tones and…

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…

Living with a rare and chronic disease such as porphyria, with its multitude of symptoms, can make it hard to stay motivated. Here are some tips that may inspire you to keep going on those days when motivation is hard to come by. Ask for support Sometimes, daily life…

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…

If you or a family member has a rare disease such as porphyria, it may help to plug into health advocacy efforts. These generally promote health and access to care at individual and community levels. Here is more information about advocacy and ways in which it could help you. About…

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…

It is important to understand what are the potential triggers of acute porphyria attacks. That way, you may be better able to avoid them if you have porphyria. In addition to genetic risks, environmental factors may trigger the development of porphyria and these painful attacks. What is porphyria?…

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…

People with porphyria often have trouble sleeping. Because a good night’s sleep is vital to physical and mental health, as well as your quality of life, you may benefit from practicing sleep hygiene. What is porphyria? Porphyria refers to a group of disorders in which porphyrins — molecules normally used…