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. For those with an invisible disability, the decision...Reactions0reactionsComments2 comments
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?...Reactions0reactionsComments0 repliesWork & 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 managers or coworkers?...Reactions0reactionsComments2 repliesWork & 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 you have to do it every day? How...Reactions0reactionsComments0 comments
Where 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, has the type of support you need changed...Reactions0reactionsComments6 repliesCopingFriends & 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 a bad flu, I started exhibiting narcolepsy symptoms...Reactions0reactionsComments0 comments
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 phosphorus in the urine rather than using it...Reactions0reactionsComments0 comments
Erin Leibowitz...Erin Leibowitz is a writer and patient advocate who was diagnosed with metastatic pancreatic neuroendocrine cancer shortly before her 30th birthday. Neuroendocrine cancer, also known as NET cancer, is a...
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 of My Rare Disease Diagnosis. After my 2...Reactions0reactionsComments0 comments
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 health conditions. This occurs not just outside the...Reactions0reactionsComments0 comments
Rare In America: What's That?...The Rare In America survey is now closed. Are you living with a rare disease? No matter where you are in your rare disease journey, we want to hear from...Reactions0reactionsComments0 comments
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 many places exist for teens and caregivers to...Reactions0reactionsComments0 comments
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 others navigating this, either as a patient or...Reactions0reactionsComments3 repliesCopingCaregivingHealthcare 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 spin together around a cul-de-sac. It felt fun...Reactions0reactionsComments0 comments
Hope for Cushing’s Disease...I was diagnosed with Cushing’s disease in ‘98. Textbook case with everything effected. Pituitary resection lead to reoccurrence so I had Gamma Knife. I went into remission and ended up...Reactions0reactionsComments1 repliesAwareness
Yoga Doesn’t Cure My Autoimmune Diseases..."Oh, you have XYZ disease? Have you tried yoga?" Wow, if I had a nickel for every time someone tossed this cookie-cutter suggestion my way. I'll take another nickel, please...Reactions0reactionsComments2 comments
New Symptoms, New Fears: The Beginning of My Rare Disease Diagnosis (Part 1)...In July 2015, I had my little boy. He was 8 pounds and 10 ounces of pure perfection. He was my third baby, and a surprise one at that. My...Reactions0reactionsComments0 comments
Life With a Rare Disease: How the Little Things Add Up...I wrote about this topic 10 years ago, and while I forgot I had written about it, it's something I've been talking about lately as I've been struggling with this...Reactions0reactionsComments1 comments
How Do You Cope?...Does anyone have tips or things that help you cope with living with a rare disease? What do you do to manage symptom, treatment, or other challenges?...Reactions0reactionsComments33 repliesCoping
Community Views: Navigating the ER as a Rare Disease Warrior...Living with a rare disease creates obstacles to healthcare. Specialist doctors understand rare diseases best. But sometimes, you need emergency care. And most doctors in the emergency room (ER) are...Reactions0reactionsComments0 comments
