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)…

If you have a rare chronic disease such as hypoparathyroidism you sometimes may feel isolated and misunderstood. Symptoms such as muscle aches or cramps, fatigue, patchy hair loss, and abnormal hand sensations, coupled with a lifelong treatment regimen, may diminish your motivation. These tips may help. Follow your body clock…

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,”…

If you have been diagnosed with hypoparathyroidism, you likely have many questions about treatment options available to you. Here is some information that may help you. Hypoparathyroidism is a rare condition in which the body does not make enough parathyroid hormone (PTH). PTH is vital to regulating and maintaining…

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…

Hypoparathyroidism is very uncommon in children, given the average age of disease onset is about 43. But it’s not unknown. Here is some information about the causes, treatment, and likely duration of hypoparathyroidism in young patients. What is hypoparathyroidism? Hypoparathyroidism is a rare condition in which the body produces…

There currently is no cure for hypoparathyroidism, and moreover, few therapy options are available — particularly for patients for whom the standard treatment of calcium and active vitamin D is not very effective in controlling the disease. Participating in clinical trials can help researchers develop new and better treatments.

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 —…

Hypoparathyroidism can lead to acute crises due to altered blood calcium levels. Physicians may not be familiar enough with the disorder to respond adequately in such a crisis. You may, for this reason, want to consider having an emergency ID card with you at all times. What is hypoparathyroidism?…

Living with a chronic disease such as hypoparathyroidism can be overwhelming. Symptoms require lifelong monitoring and may include weakness, muscle cramps, abnormal sensations in hands and feet, excessive nervousness, uncontrollable spasms, and brain fog. Everyday disease management can significantly affect your quality of life and may even…