Getting a Rare Disease Diagnosis: What's in a Name?...Recently, a friend of mine, Fiona, visited her cardiologist. She has been having some troubling symptoms that have been going on for several years now. Although she had been to...Reactions0reactionsComments0 comments
The Big Craple Incident: How My Rare Disease Canceled My Travel Plans...A special trip to New York City was a little over 24 hours away. I was going to honor one of my favorite humans, Georgia Arnold, for her contributions to...Reactions0reactionsComments0 comments
3 Ways to Help Professionals Understand Your Rare Disease...As our family's rare disease community (VAMP2) continues to grow, I am often frustrated with the professionals who are giving this diagnosis to new families. I feel that they believe...Reactions0reactionsComments0 comments
Embracing Diverse Coping Mechanisms as Parent Caregivers...As a parent caregiver raising a child with a rare disease, my journey has been filled with different challenges, victories, and profound learning experiences. One of the most enlightening aspects...Reactions0reactionsComments0 comments
It's Just the Way You Are...I just turned 60. I have been questioning many things, regarding my health, for as long as I can remember. I went to doctors, or was taken, and never really...Reactions0reactionsComments2 comments
Living With Congenital Adrenal Hyperplasia...Living with a genetic condition like congenital adrenal hyperplasia (CAH) can pose unique challenges. But CAH does not have to define a person’s life. With the right treatment plan, most...Reactions0reactionsComments0 comments
Fill Your Cup Giveaway...The Fill Your Cup Giveaway is now closed. Thank you for your interest! February 29th is the the rarest date of all, so it is no surprise that this year...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments112 replies
Will you take our In America survey and help others understand the true impact of rare diseases? ...The In America survey is now closed. To better understand the patient experience and realities of living with a rare disease, we are fielding our Rare Disease In America survey...Reactions0reactionsComments0 replies
Kidney Transplant/Primary Immune Deficiency...Hi all! Feeling rather alone. I had a kidney transplant because I have Compliment 3 Glomerulopathy. I also have Common Variable Immune Deficiency. The balance of that disease with my...Reactions0reactionsComments1 replies
Shannon Stratton...Shannon Stratton is an artist and research administrator who was born with X-Linked Hypophosphatemia and diagnosed with Rheumatoid Arthritis at 18. Instead of letting illness define her, Shannon chose to...
What It Means to Celebrate Moments as a Rare Disease Family...On my journey, celebrating milestones isn't just about the milestone itself. It's also about our family's journey leading up to it. It's the hours fighting with insurance to get therapies...Reactions0reactionsComments0 comments
Numbness in fingertips, sensations in feet and head all depends on what I eat....Started with numbness in finger tips, then to my feet feeling weird in the morning when I got up, now I have constant sensations in my feet, I get sores...Reactions0reactionsComments2 repliesDiagnosis
Antibiotics experience: Azithromycyn, Ethambutol and Refampin...A member is interested in feedback from the community from anyone who has taken any of the above antibiotics with some degree of success. Do you or someone you know...Reactions0reactionsComments0 repliesSide EffectsTreatmentTips & Advice
What to Know About Rare Motor Neuron Diseases...Motor neuron diseases (MNDs) are a class of diseases that affect certain important cells. These cells, called motor neurons, control the muscles that help with movement. Your body uses motor...Reactions0reactionsComments0 comments
Caring for a Child With a Rare Disease...Raising a child is never easy, but it can be especially challenging if your child has a rare disease. There are 5,000 to 8,000 different rare diseases that all present...
seronegative gMG treatment beyond IVIG and/or Apheresis...IVIG was a fail for me (tried more than one product) and am currently receiving Apherisis every 3 weeks via an AV Graft in my arm. Doctors predict this will...Reactions0reactionsComments0 repliesTreatment
Doctor just said I have some random virus but am wondering if it is true or not....So i went to the doctor today and they said I just have some random virus but do not know if it is true. symptoms: Body aches, Fever 101-102.3 it...Reactions0reactionsComments1 repliesHealthcare TeamSymptomsDiagnosis
My Experience With New Jersey's Personal Preference Program...Have you heard of state Medicaid programs that allow a family member or friend to become a paid caregiver? New Jersey's Personal Preference Program is a Medicaid-based program that allows...Reactions0reactionsComments0 comments
what are some tips for managing rar disease?...Early Diagnosis: First and foremost, it's crucial to get a proper diagnosis as early as possible. Due to the rarity of the disease, it might take longer than usual. Consulting...Reactions0reactionsComments0 repliesDiagnosis
