What to Know About Rare Motor Neuron Diseases...Motor neuron diseases (MNDs) are a class of diseases that affect certain important cells.... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
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?... By Alex Gaudlap2 min readBookmark for laterReactions 0 reactions Comments0 comments
What Is the Impact of Rare Disease Awareness Days?...who undoubtedly have a rare disease.... By Natalie Abbott2 min readBookmark for laterReactions 0 reactions Comments0 comments
Building a Caregiving Team: Finding In-Home Help...Life with a rare disease can require extra at-home help and support.... By Editorial Team 4 min readBookmark for later
What to Know About Getting a Second Opinion...It is normal to get a second opinion when you are faced with a serious health issue. Many people do it.... By Editorial Team 3 min readBookmark for later
Reflecting on My 20th Anniversary With My Rare Disease...I got a treatment for POTS, which helped me a lot.... By Annie-Danielle Grenier4 min readBookmark for laterReactions 0 reactions Comments0 comments
Lessons Learned in Navigating Medical Debt...If needed, when dealing with a debt collector, you may be able to request a third-party arbitrator to assist with settling a... By Jenny Jones3 min readBookmark for laterReactions 0 reactions Comments1 comments
What to Know About Kidney Transplants...A kidney from a deceased donor lasts an average of about 10 years. A kidney from a living donor can last more... By Editorial Team 4 min readBookmark for laterReactions 0 reactions Comments0 comments
Clinical Trial Glossary...Phase 1: A stage in which a small group of volunteers takes a drug or tests a new device.... By Editorial Team 4 min readBookmark for laterReactions 0 reactions Comments0 comments
Genetics 101...A genetic disorder is a condition caused by an abnormality in DNA.... By Editorial Team 4 min readBookmark for laterReactions 0 reactions Comments0 comments
Preparing for End-Stage Kidney Disease...A kidney transplant is a surgery that places a healthy kidney from a donor into your body.... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
The Impact of Rare Disease on Siblings...This can have a profound impact on the healthy children of the family. A child with a rare disease can bring a... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
How Are Rare Kidney Diseases Diagnosed?...This is when a small tissue sample is taken from your kidney to analyze in a lab.... By Editorial Team 4 min readBookmark for laterReactions 0 reactions Comments0 comments
Holidays and Rare Diseases...Or we opt to enjoy a meal at a restaurant instead. Others also choose to have meals at their homes catered.... By Jenny Jones2 min readBookmark for laterReactions 0 reactions Comments1 comments
How Do I Know If I Have Adult-Onset Still’s Disease?...It is also possible to have more than one fever in a day. AOSD is a type of arthritis.... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
Journey to Chronic Rare Disease Treatment...And if they dismiss your concerns, it might be a sign to get a second opinion! On that note... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments0 comments
Questions to Ask Your Doctor When You Have X-linked Hypophosphatemia...Whether you are diagnosed as a baby, a child, or an adult, understanding your condition and treatment options is important for managing... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
Coping with Grief During the Holiday Season...It created a powerful sense of security. Because of the close proximity when there was a loss, I felt it deeply.... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
Grieving Loss in the Rare Disease Community...Allowing grieving helps us to process a loss so that we may reach a level of closure and peace.... By Jenny Jones4 min readBookmark for laterReactions 0 reactions Comments0 comments
3 Things I Learned About Doctors After My Son's Rare Diagnosis...If you or a family member are a rare disease patient, chances are it took quite some time to receive an... By Alex Gaudlap3 min readBookmark for laterReactions 0 reactions Comments0 comments