Living for the Good Things...Living with a rare disease comes along with a lot of difficulties. It can be scary at times, too, not having control...reactionscomments
Parenting and Rare Disease: 5 Bonding Activities to Try With Your Child...If you are caring for a medically complex child, it can be difficult to find ways to bond, interact, and keep them...reactionscomments
Does anyone have olgilvie syndrome?...Does anyone have olgilvie syndrome and what did Dr say prognosis was? This is very rare from what we were told....reactions2replies
The Power of Your Voice: Sharing All Symptoms with All Specialists...Time and time again, I'm reminded about the importance of telling every single one of my doctors about my health updates –...reactions2comments
Groin Older: Aging With Hemophilia...As a child born in the mid-70s with hemophilia, I was part of a unique generation. Access to new treatments made a...reactions4comments
Parenting and Rare Disease: A Journey Through Grief and Acceptance...The day my amazing little boy was born, I knew he was different. I was 22 years old and forced to grow...reactionscomments
Reflecting on the People We Would Never Meet Otherwise...It's a beautiful thing to meet someone who makes you forget your troubles. - author unknown I have always strived to see...reactionscomments
Personal Grooming With a Rare Disease...Living with a rare chronic disease isn't for the faint of heart. I live with type 1 narcolepsy, and the long list...reactionscomments
Caring for Someone With a Rare Disease...Caregiving for a loved one with a rare disease is both rewarding and challenging. Much time, energy, and resources can go into...
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
Dietary 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
