Mary Chapman, features writer —

To empower and equip members of the rare disease community to engage state leaders in matters of importance to patients and their families, the National Organization for Rare Disorders (NORD) has launched an initiative across the U.S. Its goal is to establish a Rare Disease Advisory Council (RDAC)…

A photo of a bespectacled young boy, his red baseball cap slightly askew as he  enjoys time outside, will be featured on the front cover of an upcoming calendar in the “Same But Different” contest to raise awareness about rare disorders. “A Lovely Day Out in Kew Gardens,”…

Treating porphyria depends on the severity of symptoms and whether the disease is acute or cutaneous. However, physicians may not be familiar enough with the disorder to respond adequately in a medical emergency. Medical alert cards can be of paramount importance in such instances. What is…

Same But Different, a nonprofit U.K. group that uses art for social change, is inviting people to choose their favorite photographs in a calendar contest to heighten awareness of rare diseases, including amyotrophic lateral sclerosis (ALS). The organization’s panel of judges has pared the number of contest submissions…

Traveling may put you at an increased risk if you have porphyria, depending on the type of disease you have. Here is some information that may help you to have a successful, safe trip. What is porphyria? Porphyria refers to a group of disorders in which…

When you have a rare disorder such as porphyria, it can be challenging to effectively communicate your concerns to physicians. Perhaps you feel your symptoms are overwhelming and need more information but aren’t sure how to ask. Here are some ways to make the most of your doctor…

The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare disorders who are pursuing personal goals through training and education. The initial phase of the five-year, $1-million #RAREis Scholarship Fund will include 32 scholarships — each totaling $5,000 —…

There’s currently no cure for porphyria, and only a few therapy options are available to treat the symptoms of this group of rare inherited blood disorders. None of them address the cause of the underlying disease. Participating in clinical trials is a way to help researchers develop…

Porphyria is a rare disease that affects fewer than 200,000 people in the U.S. Many physicians are, therefore, unfamiliar with it and its treatment. This could be a major problem, particularly in a medical emergency. If you have the disease, working with your primary doctor to develop and…

If you have porphyria, you likely may regularly have trouble getting a good night’s sleep. There are ways to help remedy that. What is porphyria? Porphyria refers to a group of disorders in which affected individuals cannot make hemoglobin, the protein that binds oxygen in…