FeaturedBiggest challenges you face in your current journey?Hi- I'm just curious about how people navigate this journey well. What are your biggest challanges and support needs? Where do people go to get support? What actually makes a...Reactions0reactionsComments37 repliesCaregivingCopingTips & Advice
FeaturedWhat fills your cups on hard days?Living with a rare disease or caring for someone who has one can be challenging. We want to know how you keep your own cup full while navigating difficult symptoms...Reactions0reactionsComments111 replies
Active yesterdayRecognizing the Symptoms of Eye ConditionsUnderstanding the symptoms of various eye conditions can help in early detection and treatment, preserving vision and eye health. Common symptoms such as blurred vision, eye pain, redness, floaters, and...Reactions0reactionsComments1 repliesSymptoms
Active yesterdaySymptoms of Eye Vision Damage?Eye vision damage can present with a variety of symptoms, depending on the underlying cause and severity. Common signs include blurred or distorted vision, which may make it difficult to...Reactions0reactionsComments2 repliesSymptoms
Active 2 days agoI wish others knew that...What is one thing you wish more people knew about living with a rare disease?...Reactions0reactionsComments39 repliesCoping
Active 2 days agoMysteryNo doctor over many years can diagnosis my skin condition. Hospitals and physicians have no idea what it is. Doesn’t show in blood work. I have researched for many years...Reactions0reactionsComments1 replies
Active 3 days agoCoping with booksI fill up my cup by reading. I love science fiction specifically, because it tells us about building the future...Reactions0reactionsComments5 replies
Active 3 days agoRare Diagnosis ExperiencesHow long did it take you to get diagnosed with your rare disease? Did you receive any misdiagnoses?...Reactions0reactionsComments86 repliesNewly DiagnosedSymptomsDiagnosis
Active 3 days agoUndiagnosed with neurological symptoms and multiple misdiagnosesHi folks! I'm currently seeing a neurologist, who is giving me multiple tests to see what rare disease I may have. About a year ago, I started randomly slurring my...Reactions0reactionsComments4 repliesSymptomsDiagnosis
Active 4 days agoWelcome! Let's Get to Know Each Other.We are glad you are here! Please introduce yourself and let us know which rare disease impacts your or your loved one's life....Reactions0reactionsComments69 replies
Active 5 days agoCaring for a child with a rare diseaseThis forum is for anyone caring for a child with a rare disease. Introduce yourself, ask a question, or share a story....Reactions0reactionsComments6 repliesCaregiving
Active 7 days agoWhat is the most annoying unsolicited advice you've heard?What annoying or unhelpful suggestions are you most tired of receiving (unsolicited!) from other people?...Reactions0reactionsComments21 repliesCoping