Active 5 days agoAnyone have any advice about CIP?(Congenital Insensitivity to Pain)...I am the caregiver of a person with CIP. As he gets older, the challenges he faces have become more concerning....Reactions 0 reactions Comments1 repliesAwarenessTips & Advice
Caring for a child with a rare disease...This forum is for anyone caring for a child with a rare disease. Introduce yourself, ask a question, or share a story....Reactions 0 reactions Comments0 repliesCaregiving
How has living with a rare disease impacted you?...As a thank you, if you qualify and complete the survey, you will be given the option to enter a drawing to...Reactions 0 reactions Comments0 repliesAwarenessResearch & Clinical Trials
I have Myasthenia Gravis and Parkinsons...I would like to find someone else or a group that I can discuss my symptoms and problems with....Reactions 0 reactions Comments3 repliesAwarenessCopingResearch & Clinical Trials
Active yesterdayFrom Parkinson’s to Progressive Supranuclear Palsy...We purchased a Mobility Chair, bought a StandUp walker and am now using walking Sticks....Reactions 0 reactions Comments0 replies
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?...Reactions 0 reactions Comments0 repliesWork & Employment
Ehlers Danlos and Epydermilosis Bulosis...I had a Vitral hernia= surgery, 2 rt shoulder surgeries for either a tendon or ligament.two for a dropped parathyroid and...Reactions 0 reactions Comments1 repliesDiagnosisAwareness
Active 5 days agoUndiagnosed still but something is wrong...All I for sure know is I have a pituitary tumor. What do I do? It’s getting hopeless and taking toll...Reactions 0 reactions Comments1 repliesCopingDepressionDiagnosis
FeaturedActive todayBiggest challenges you face in your current journey?...Where do people go to get support? What actually makes a difference?...Reactions 0 reactions Comments19 repliesCaregivingCopingTips & Advice
How can we support you?...What information do you hope to find on our site? Is there anything in the rare community as a whole you would like...Reactions 0 reactions Comments11 repliesAwarenessCopingTips & Advice
Active 5 days agoI am diagnosed with both Neuromyelitis Optica and Myasthenia Gravis. I am searching for others with the same diagnosis....I would appreciate any advice or feedback. I am also reaching out to anyone else who is experiencing both these diseases....Reactions 0 reactions Comments1 repliesCostCopingDiagnosis
Transitioning From Pediatric to Adult Care...Do you have any tips for others navigating this, either as a patient or a caregiver?...Reactions 0 reactions Comments3 repliesHealthcare TeamCopingCaregiving
Do you allow your child with a rare disease to go on overnight school field trips?...If so, what tips have worked for you and your child? How did you prepare your child and yourself for this experience?...Reactions 0 reactions Comments0 repliesCaregivingTravel
Blood Test...Had a Parathyroid Test today. Came back high. Should I be worried?...Reactions 0 reactions Comments1 replies
Podcast opportunity for Rare Disease Patients...I have a podcast called Rare connections on YouTube....Reactions 0 reactions Comments1 repliesAwareness
DBS and previous blood clots...I have a complicated history of blood clots that put my scheduled dbs on hold for over 1.5 years....Reactions 0 reactions Comments0 repliesCoping
West Nile Virus...Walk very slowly with a cane....Reactions 0 reactions Comments0 repliesTreatmentExerciseCoping
Patient with strange symptoms...However, when she travels and is at sea level, her symptoms completely disappear within a couple of hours....Reactions 0 reactions Comments4 repliesDiagnosisTips & AdviceSymptoms
My rare disease caused my kidney failure...a bad disease called CMT....Reactions 0 reactions Comments2 replies
Environmental Allergies Or No...I have a new doctor and I tried to tell him this is the only thing that works....Reactions 0 reactions Comments2 replies