Rare Diseases and Preparing for an Emergency...Medical emergencies are certainly no fun, especially when a rare disease is in the mix. However, being prepared for a potential emergency...reactions2comments
My MG Journey...I’ve always fallen down since childhood. Doctors didn’t know what I had. Never had enough strength to play kickball. Until I could...reactions6comments
Community Views: The Hardest Symptoms to Manage...There are many challenges to living with a rare disease. The challenges may be physical, mental, and emotional. Having a rare disease...reactionscomments
How has living with a rare disease impacted you?...Those living with a rare disease are often the experts on their disease. To better understand the patient experience and realities of...reactionsrepliesAwarenessResearch & Clinical Trials
5 Things About Mental Health and Life With Rare Diseases...May is Mental Health Awareness Month. Like many in the rare disease community, maintaining my physical and mental health is ongoing work...reactions2comments
Doctors and Specialists Who Treat X-Linked Hypophosphatemia...People with X-linked hypophosphatemia (XLH) develop a wide range of symptoms such as weak bones and teeth, fractures, fatigue, and muscle weakness...reactionscomments
undiagnosed with normal blood work...These are my symptoms and I just wonder if anyone else has the same thing and has been diagnosed with something where...reactions9repliesDiagnosis
Understanding Non-apparent Disabilities in the Workplace...About 1 in 4 American adults live with a disability. Many people living with a disability are able to work and do...reactions2comments
What could workplaces do to foster a more disability-inclusive culture?...What ideas do you have for employers to create a more supportive work environment for people with visible or invisible disabilities?...reactionsrepliesWork & Employment
Workplace Experiences...Has your rare disease impacted you in the workplace? What kind of experiences (positive or negative) have you had with disclosing to...reactions3repliesWork & Employment
Webinar: Moments of Mindfulness – A Patient's Perspective...What do people mean when they talk about practicing mindfulness? What are they actually doing? How much time does it take? Do...reactionscomments
Active todayWhere do you find support?...Who supports you in a meaningful way? What does their support look like? As you have moved along your rare disease journey...reactions22repliesCopingFriends & Family
Living an Authentic Life With a Rare Disease...I was diagnosed with narcolepsy halfway through my college career. My disease onset had been quick. Just a few weeks after getting...reactions5comments
What Is X-linked Hypophosphatemia?...X-linked hypophosphatemia (XLH) is a rare disorder that causes low phosphorus levels. This happens because people with this condition pass the mineral...reactionscomments
Erin Leibowitz...Erin Leibowitz is a writer and patient advocate who was diagnosed with metastatic pancreatic neuroendocrine cancer shortly before her 30th birthday. Neuroendocrine...
My Accidental Rare Disease Diagnosis (Part 2)...This is the second article in a 2-part series. Be sure to check out Part 1: New Symptoms, New Fears: The Beginning...reactionscomments
Fighting Misconceptions Can Save Lives: Rare Disease Surveillance...Misconceptions abound amidst many health conditions – particularly rare diseases – and even among the medical treatments available to prevent or manage...reactionscomments
Transitioning From Pediatric to Adult Care With a Rare Disease...Young people living with a rare disease are living longer than ever. That’s the good news. The less-good news is that not...reactionscomments
Transitioning From Pediatric to Adult Care...Does anyone have experience with transitioning from a pediatric healthcare team to and adult care team? Do you have any tips for...reactions4repliesCopingCaregivingHealthcare Team
Xanadu I or Don't I? A Rare Disease Roller Skating Odyssey...In the earliest days of the COVID-19 pandemic, my partner Gwenn and her friends decided to order roller skates and take a...reactions1comment
