Caregiver's Love...with a rare disease.... By Frank Rivera4 min readBookmark for laterReactions 0 reactions Comments0 comments
Advocacy Anywhere: Communication With Your Doctor...Changing a bad relationship to a good one can be quite difficult, but there are ways to communicate more effectively to... By Ella Balasa1 min readBookmark for laterReactions 0 reactions Comments0 comments
Fighting Misconceptions Can Save Lives: Rare Disease Surveillance...A common misconception about familial adenomatous polyposis (FAP) is that it's a death sentence.... By Jenny Jones3 min readBookmark for laterReactions 0 reactions Comments0 comments
Asking for Help and Applying for Disability...But third-year has proven to be a different beast. Back in person, still studying, and basically on my feet 8 By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
Learning Self-advocacy With Rare Disease...At the time, our insurance plan required a referral from a PCP to be evaluated by any specialist.... By Jenny Jones4 min readBookmark for laterReactions 0 reactions Comments0 comments
New Year’s Resolutions and Rare Diseases...I rented a vocal studio to practice a few times a week and did my best not to judge myself.... By Jessica Hanson3 min readBookmark for laterReactions 0 reactions Comments0 comments
Parenting and Rare Disease: 5 Bonding Activities to Try With Your Child...Whether your child can do things independently or not, music can be a fun way to bring happiness into a room.... By Alex Gaudlap4 min readBookmark for laterReactions 0 reactions Comments0 comments
Which Specialist Needs to Know Your Symptoms? All of Them....In fact, if I don't remember to take my digestive enzyme with a meal, I start to feel "unusually" bloated a... By Jenny Jones2 min readBookmark for laterReactions 0 reactions Comments0 comments
My Rare Disease Holiday Survival Guide...Some of these needs might include a ride to and from the venue.... By Tatiana Corbitt2 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
Finding Joy in the Rare Life...It is hard to remember what my life was like before having a child with a rare disease.... By Alex Gaudlap2 min readBookmark for laterReactions 0 reactions Comments0 comments
Inclusivity and Rare Diseases: 6 Things for Friends and Family to Consider...There are a lot of restaurants in my city that I can eat at safely, so I was... By Jessica Hanson2 min readBookmark for laterReactions 0 reactions Comments0 comments
Living for the Moment: Doing the Unexpected With Pompe Disease...The neurologist had me do a muscle biopsy and a blood test for Pompe. He then referred me to see By Dwayne Wilson4 min readBookmark for laterReactions 0 reactions Comments0 comments
How Is X-linked Hypophosphatemia Diagnosed?...A urine test is also called a urinalysis.... By Editorial Team 2 min readBookmark for laterReactions 0 reactions Comments0 comments
Big Moves for Better Care...made a big decision. ... By Alex Gaudlap3 min readBookmark for laterReactions 0 reactions Comments3 comments
5 Changes I Would Like to See in the U.S. Healthcare System...I’ve experienced sexism on several occasions. One male doctor refused to prescribe me a common pain medication (not a narcotic) for a UTI.... By Jessica Hanson3 min readBookmark for laterReactions 0 reactions Comments4 comments
Community Members Share Their MAC Lung Disease Experiences...Navigating a MAC lung disease diagnosis can be challenging. There can be a lot of uncertainty and many questions that arise.... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
Questions to Ask Your Doctor About Pompe Disease...Being tested for Pompe disease can be a confusing process. Most people will take a blood test followed by genetic testing.... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
What Is the Social Health Network?...Whether you have worked on a new project, created a new campaign, or received a new recognition, this is the perfect place to... By Editorial Team 4 min readBookmark for laterReactions 0 reactions Comments0 comments
