support groups

When you hear the word “family,” who do you think of? Most people think of their immediate family and relatives, such as parents, siblings, grandparents, aunts, uncles, and cousins. However, this word means so much more to me. After a rare disease diagnosis, we often…

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…

Rare and chronic conditions such as Pompe disease can take an emotional toll on patients and caregivers on top of everything else. Between symptoms such as muscle weakness and fatigue, and feelings of isolation, coping can be a challenge. It may seem as if hardly anyone understands what…

Starting a 501(c)(3) tax-exempt nonprofit isn’t easy, but the National Organization for Rare Disorders gave a few tips for those  looking to begin the complex process in its Feb. 20 webinar.  William Whitman…

Pompe disease is a rare genetic disease characterized by symptoms such as muscle weakness, scoliosis, and heart problems. Dealing with these symptoms can be very stressful, and patients and caregivers usually need a lot of support. Here are a few ways to find more information about Pompe…

Pompe disease can affect both children and adults, and cause symptoms that range from slow growth and poor reflexes to heart and liver problems. Caring for patients with Pompe disease can be challenging and cause stress, so here are some tips if you are a caregiver to help…