News, Events & Blogs
Finding Emotional & Mental Health Support for Patients & Caregivers
Living with a rare disease—or caring for someone who does—comes with unique emotional and mental health challenges. Feelings of isolation, anxiety, and uncertainty about the future are common. However, support is available. This blog will explore the emotional impact of rare diseases, coping strategies, and resources for mental health support.
Misdiagnosed With Monkeypox: Understanding How Rare Conditions Are Presented
Even the most qualified medical practitioners make mistakes when attempting to diagnose patients’ rare conditions. Therefore, the average person cannot be held to a high standard when it comes to recognizing whether someone in their lives has a rare disease. It would be nearly impossible for a layperson to identify whether someone they pass by on their daily commute has a disease, let alone a rare one.
Madelaine and Ally's Story
Madelaine had a normal pregnancy and gave birth to a healthy baby named Ally in a small, less than 10,000 person town named Manitoba, Canada. Ally was Madelaine’s second daughter, with her first being her neurotypical eldest daughter, Bethany.
Alex and Caroline’s Story
Caroline Cheung-Yiu is the parent of a child living with a rare disease. Her son Alex is a RareWear participant who was issued a device in connection with the RareWear program which monitors vital signs. Caroline graciously shared her family’s story with us in the hope of helping others who might benefit from the RareWear program.
Interview with RareWear Patient Heidi Woods
The Rare Genomics Institute’s RareWear program connects rare disease patients to medical device providers, which offer free devices to help patients to better monitor and manage their conditions. RareWear is an ongoing program and patients are welcome to apply throughout the year. Learn more about RareWear here: https://www.raregenomics.org/rarewear/home.
Heidi Woods is a RareWear participant who began using her device, a Holter monitor to measure heart rate, earlier this year. Heidi was diagnosed with Ehlers-Danlos syndrome in 2009. Heidi graciously shared her story with us in the hope of helping others who might benefit from the RareWear program.