Keeping Your Family Connected When Raising a Child With a Rare Disease...Raising a child with a rare disease extends beyond medical hurdles – it encompasses emotional and familial challenges. The impact ripples through...reactionscomments
FeaturedDietary Changes...Hi, I have been diagnosed with a rare genetic condition, AMACR deficiency, that so far is asymptomatic but I do have an...reactions11repliesCopingDiet & NutritionNewly Diagnosed
How Do I Find a Specialist for My Rare Disease?...When you are diagnosed with a rare disease, you will likely have many questions and concerns. Finding a specialist who can guide...reactionscomments
Why Caregivers Feel Isolated...Being a rare caregiver comes with many challenges that the community as a whole can't relate to. Though every rare family is...reactionscomments
Participating in a Focus Group as a Rare Disease Patient...Recently, the Cystic Fibrosis (CF) Foundation invited me to participate in a focus group with other late-diagnosed CFers. It was a fascinating...reactionscomments
Holidays with a Rare Disease...The holidays can be exciting but also come with many challenges for those with rare diseases. What special considerations do you have...reactions1replyCopingFriends & Family
My Rare Disease Holiday Survival Guide...Living with a rare disease like narcolepsy means that I have to live my life around my symptoms. Unfortunately, we don't get...reactions3comments
Creating Business Cards for Rare Disease Advocacy...Think back to any time you shared about your rare disease with someone. Perhaps it was with a stranger, and it was just in passing. Perhaps it was...reactionscomments
Into the Unknown With My Rare Disease...I had a dream (or was it a nightmare?) last night about my disease symptoms increasing rapidly. I woke up blurry-eyed, slightly...reactionscomments
3 Ways You Can Help a Rare Disease Caregiver...I am not going to lie and say that being a rare disease parent is easy. It is often a challenge for...reactionscomments
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....reactions6repliesCaregiving
Navigating Life with a Rare Disease: An Accessibility Story...The most consistently bothersome aspect of living with hemophilia is my left ankle. Due to both minor and, on rare occasions, major...reactions3comments
Reflecting on My 20th Anniversary With My Rare Disease...My life was upended because of a viral infection 20 years ago. In the fall of 2003, I was working in a...reactionscomments
From One Caregiver to Another: What I Learned After My Child's Diagnosis..."You are not alone." These are the 4 most common words I choose to tell another caregiver. I know how heavy it...reactionscomments
Lessons Learned in Navigating Medical Debt...With any medical event, but especially when it's a chronic illness or rare disease, medical debt can easily build up. Depending on...reactions1comment
Caring for Hudson: Q&A With a Parent Managing Hypotonic Cerebral Palsy...The best thing that has come out of being part of the rare disease community is the passionate, loving, and optimistic people...reactionscomments
How Nature Therapy Helps Me Live Better With a Rare Disease...Access to lush, green natural spaces feels like a privilege to me. As a person living with a rare disease, narcolepsy, it...reactionscomments
How I Get Through Tough Days...Humor plays a huge role in my life. I'm pretty open about having hemophilia A, and I rarely miss an opportunity to...reactionscomments
Grad School ...Any tips for managing grad school with rare disease? I suffer from neuromuscular disease and it affects basically every part of my...reactions5replies
Being the Change: How My Advocacy Started...I remember the day the genetic counselor called me with my son's diagnosis. She gave me information about a paper published on...reactionscomments
