Author Archives: Mary Chapman

Making Every Doctor Visit Count When You Have Porphyria

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…

Clinical Trials for Porphyria

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…

Treatment Plan for Porphyria

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…

Porphyria and Sleep

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…

Acute Porphyria and Diet

If you have acute porphyria, it’s important to know that diet and nutrition may help to ease your symptoms. What is porphyria? Porphyria refers to a group of disorders in which affected individuals cannot make hemoglobin, the protein that binds oxygen in red blood cells. Due to…

The Assistance Fund Launches Aid Program for Out-of-pocket Medical Costs

To help patients and families facing out-of-pocket medical costs, The Assistance Fund (TAF) has opened a new program for eligible individuals living with porphyria. The TAF Porphyria Financial Assistance Program helps with therapy-related copayments, health insurance premiums, and incidental medical expenses related to the metabolic disorder, which has…