New Year… Same Old Rare DiseaseThe holidays have finally passed. Now it is time to start preparing for the upcoming new year. Setting goals for personal improvement is something I like to do every year... By Tatiana Corbitt2 min readBookmark for laterReactions0reactionsComments0 comments
Living With a Rare Kidney DiseaseMost rare kidney diseases last a long time. There is no cure, and they often do not go away on their own. This can make living with a rare kidney... By Editorial Team 4 min readBookmark for laterReactions0reactionsComments0 comments
How to Deal With Tough Mornings and Chronic PainEditor’s Note: This article originally was written by Annelyse Andal and shared by our partner site Psoriatic-Arthritis.com. You wake up to the sound of your alarm clock. With sleepy and... By Editorial Team 3 min readBookmark for laterReactions0reactionsComments0 comments
Finding Friendship in the Rare Disease CommunityWhen I was first diagnosed with a rare disease, I struggled to find a sense of community. Like many others, I had never heard of my disease before, let alone... By Jessica Hanson3 min readBookmark for laterReactions0reactionsComments0 comments
What Makes a Rare Disease Patient Advocate?Rare disease advocates are patients that have a story to tell and are willing to share these experiences with the world. Our goal is to share the story of living... By Ella Balasa2 min readBookmark for laterReactions0reactionsComments0 comments
Yes, You Can Travel as a Dialysis PatientWhen I got the news that my kidney function had diminished to the point that I needed dialysis, my heart sank. I was young, married, and fairly active with recreational... By Editorial Team 2 min readBookmark for laterReactions0reactionsComments0 comments
5 More Practical Tips to Thrive After a Kidney TransplantIn part one, 5 Practical Tips to Thrive After a Kidney Transplant, I discussed the pertinent things that you need to keep your kidney working at its best. The next... By Editorial Team 2 min readBookmark for laterReactions0reactionsComments0 comments
Holidays and Rare DiseasesHolidays with a rare disease can be challenging, particularly regarding energy, diet, and disability accommodations. Balancing energy and stress levels during holiday events is a common challenge. Many families prepare... By Jenny Jones2 min readBookmark for laterReactions0reactionsComments1 comments
Amy’s story: Let’s play a little game● Lift up your right arm, and now lift up your left. Lower them again. ● Tip your head up. Look up as high as you can. Move your eyes... By AmyMillardChronicMom2 min readBookmark for laterReactions0reactionsComments2 comments
My Mental Health DiscoveriesContent Note: This article describes suicide. If you or a loved one are struggling, consider reading our suicide prevention article. Through my life with a rare disease, I've learned if... By Frank Rivera2 min readBookmark for laterReactions0reactionsComments0 comments
Coping with Grief During the Holiday SeasonEditor’s Note: This article was originally shared by our sister site, H-I-V-.net, and was written by Khafre Kujichagulia Abif. I can remember when the holidays became emotionally difficult. My father... By Editorial Team 3 min readBookmark for laterReactions0reactionsComments0 comments
5 Practical Tips to Thrive After a Kidney TransplantNot long after receiving my kidney transplant, I remember sitting on my couch, majorly uncomfortable and in pain after making the slightest movement. I was irritated with myself and those... By Editorial Team 3 min readBookmark for laterReactions0reactionsComments0 comments
My Rare Disease Journey With HemophiliaGreetings! My name is Shawn, and I'm happy to be a contributing writer for RareDisease.net. Maybe you are also living with a rare medical condition. Or perhaps a loved one... By Shawn Decker4 min readBookmark for laterReactions0reactionsComments0 comments
What Is the Social Health Network?Like our other Health Union condition communities, the Social Health Network brings people together to drive unique and impactful conversations about health. It also aims to expand opportunities for health... By Editorial Team 4 min readBookmark for laterReactions0reactionsComments0 comments
How to Navigate Online Doctor RatingsEditor’s Note: This article was originally written by Elizabeth Medeiros and shared by our partner site Psoriatic-Arthritis.com. The internet has changed how we do everything these days, from dating to... By Editorial Team 2 min readBookmark for laterReactions0reactionsComments2 comments
So You Have a Rare Disease… Now What?Being diagnosed with a rare disease can be shocking, even scary! When I was diagnosed with Narcolepsy Type 1, I was relieved to know what the source of the problem... By Tatiana Corbitt2 min readBookmark for laterReactions0reactionsComments2 comments
Voting with a Rare DiseaseVoting is a fundamental American right, but it has special meaning for people with disabilities or health conditions. Until federal laws like the Americans with Disabilities Act (ADA) were enacted... By Editorial Team 4 min readBookmark for laterReactions0reactionsComments0 comments
When a Low Probability Feels ScaryI’m no stranger to autoimmune conditions. Let's take a look: I am among the roughly 1% of the population that has celiac disease, an autoimmune condition related to the consumption... By Jessica Hanson2 min readBookmark for laterReactions0reactionsComments1 comments
How Exercise Kept Me Out of the Hospital Until I Was 26Editor’s Note: This article was written by Megan Barlow and originally appeared on our Cystic-Fibrosis.com community. I have always been active. Since I can remember, I’ve been involved in all... By Editorial Team 3 min readBookmark for laterReactions0reactionsComments0 comments
Finding a TherapistI’m a fan of therapy, but to be honest, I personally haven’t always found it to be helpful in the past. Perhaps I just hadn’t found the right therapist for... By Jessica Hanson3 min readBookmark for laterReactions0reactionsComments0 comments