Rare Disease Advocacy Is a Constant, Never-ending Opportunity...Recently, I was reminded, in the most unexpected way, that advocacy doesn't take a break even when it's the furthest thing from your mind. I attended an At-Large Meeting for...Reactions0reactionsComments0 comments
What does advocacy mean to you?...Advocacy can take many different forms - raising awareness in your local community, sharing on social media, and taking legislative action are just a few examples. Are you involved or...Reactions0reactionsComments2 repliesAwareness
Red rash in my mounth...I have red "rash" or something in her mounth for more then 2 months. What do you think this is?...Reactions0reactionsComments1 replies
Community Views: We Are Rare, But Not Alone...Rare diseases can change your life with the everyday challenges it brings. It is hard enough to live with the constant stress of symptoms. It gets even harder when you...Reactions0reactionsComments0 comments
5 Changes I Would Like to See in the U.S. Healthcare System...As someone who has been to many, many doctors for multiple chronic illnesses and a rare disease, there are so many things I wish for in the American healthcare system...Reactions0reactionsComments4 comments
Alex Gaudlap...Alex Gaudlap is based in New Jersey, right outside of Philadelphia. Alex is one of the many people that did not plan to be part of the rare disease community...
What If I Hadn't Been Born With a Rare Disease?...There's a Marvel Comics series called "What If...?" It offers mind-bending scenarios about what could have happened if one little thing was different about a character. WHAT IF...Spider-Man was bitten...Reactions0reactionsComments0 comments
Why I Am Scared to Own a Handicap Parking Sticker...Editor's Note: This article was written by Janeil Whitworth, a Health Leader living with cystic fibrosis. Read more of Janeil's articles at Cystic-Fibrosis.com. Disability is not always visible. Disability can...Reactions0reactionsComments8 comments
Invisible Illness...What aspects of your rare disease are invisible to others?...Reactions0reactionsComments69 repliesCoping
Medical Mystery Turned Into a Rare Disease Warrior...Josiah J is a wild spirited two-year-old who has familial cold autoinflammatory syndrome (FCAS). When I was pregnant with Josiah I developed a lot of complications, but a mother's intuition...Reactions0reactionsComments2 comments
3 Ways I Combat Burnout...As a person living with a rare and chronic disease, I have much less energy than the average person. Even keeping up with the bare minimum of daily tasks necessary...Reactions0reactionsComments0 comments
Planning a Vacation With a Rare Disease...Summer is here! Time to travel to new places, experience local cuisine, and have some fun in the sun! Okay, easier said than done for individuals with chronic illnesses. With...Reactions0reactionsComments2 comments
Traveling With a Rare Disease...Tell us about your travel experiences? How do you prepare for a long or short trip? Do you have any tips to share with the community?...Reactions0reactionsComments6 repliesTravel
Rare Disease in Children...Were you diagnosed in childhood? How did having a rare disease shape you? If you are a caregiver, share about your little warrior!...Reactions0reactionsComments2 replies
West Nile Virus...Long term walking difficulty. Walk very slowly with a cane....Reactions0reactionsComments0 repliesExerciseCopingTreatment
Hypoglobulimia ...Just wondering how many others have this, mine was med induced....Reactions0reactionsComments9 repliesTips & AdviceResearch & Clinical TrialsNewly Diagnosed
Hygiene and Chronic Illness: 5 Tips for "Lazy" People...Editor's Note: This article was written by Mikayla Bianchin, a Health Leader living with cystic fibrosis. Read more of Mikalaya's articles at Cystic-Fibrosis.com. While living with a chronic illness, keeping...Reactions0reactionsComments0 comments
Guys, I'm so rare, it seems I'm the only one here with autoimmune cholangitis...Please tell me I'm not the only one with this diagnosis, here...Reactions0reactionsComments1 replies
Am I Too Chill About My Rare Disease?...Recently, I had lunch with my fellow RDs (Rare Diseasers). These are some of my friends who also live with hemophilia. Since we live more than 60 miles apart, we...Reactions0reactionsComments0 comments
Michelle Fruhschien...Michelle here- aka Mamabear. My 3-year-old daughter, Hailey, was diagnosed at 8 months of age with a rare diagnosis, Jordan's syndrome, a random mutation of the gene PPP2R5D. At the...
