A Caregiver's Guide to Explaining a Rare Disease Diagnosis...As our family's rare disease community (VAMP2) continues to grow, I am often frustrated with the healthcare providers who are giving this...reactionscomments
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...reactionscomments
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...reactions3comments
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...reactionscomments
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...reactionscomments
What 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...reactions114replies
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...reactionsreplies
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...reactions4replies
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...
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...reactionscomments
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...reactions3repliesDiagnosis
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...reactionsrepliesSide 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...reactionscomments
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...
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...reactions2repliesTreatment
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...reactions2repliesHealthcare 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...reactionscomments
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...reactionsrepliesDiagnosis
Questions I Ask Myself on My Healing Journey...I started my medical trauma healing quest in the early 2000s, but since 2022, I have made a consistent effort. I have...reactionscomments
What Is the Impact of Rare Disease Awareness Days?...January marks the awareness day for one of my rare diseases, Moebius syndrome. Awareness is sometimes a funny concept when it comes...reactionscomments
