Thank You for Taking Our Survey!We appreciate you taking the time to answer all of our questions. Your responses will help us better understand life with a rare disease. New here? We invite you to...Reactions0reactionsComments0 comments
Tips for Navigating Gatherings With a Rare DiseaseNavigating gatherings with loved ones can be tricky enough on its own. Throw in a rare disease – and maybe a few extra chronic conditions – and I find myself...Reactions0reactionsComments0 comments
Tired of Doctors Calling Me UnusualI've learned a lot about the medical profession over the years and here in the west, they are trained to look at numbers on tests for everything. If your numbers...Reactions0reactionsComments3 comments
Learning Self-advocacy With Rare DiseaseI was diagnosed with my first rare disease, familial adenomatous polyposis (FAP), around the age of 8. FAP is a rare genetic disease I inherited from my mother, who inherited...Reactions0reactionsComments0 comments
The Lingering Threat of Self-StigmaLiving with a rare medical condition is a multi-faceted endeavor. First, you have the medical reality, where your own acceptance is imperative in reaching your health goals. That journey alone...Reactions0reactionsComments0 comments
Finding a Support Person for Doctor AppointmentsPeople with chronic health conditions often face complex treatment plans and multiple doctor visits. Brain fog, fatigue, and problems concentrating are frequent side effects too. That is why medical experts...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments0 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...Reactions0reactionsComments0 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...Reactions0reactionsComments0 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...Reactions0reactionsComments0 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...Reactions0reactionsComments2 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...Reactions0reactionsComments0 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...Reactions0reactionsComments0 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...Reactions0reactionsComments1 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...Reactions0reactionsComments2 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...Reactions0reactionsComments0 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...Reactions0reactionsComments0 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...Reactions0reactionsComments0 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...Reactions0reactionsComments0 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...Reactions0reactionsComments0 comments
