Participating in a Focus Group as a Rare Disease PatientRecently, the Cystic Fibrosis (CF) Foundation invited me to participate in a focus group with other late-diagnosed CFers. It was a fascinating experience that led me to want to share... By Gina Miller3 min readBookmark for later
My Rare Disease Holiday Survival GuideLiving with a rare disease like narcolepsy means that I have to live my life around my symptoms. Unfortunately, we don't get the holidays off from our rare diseases! Living... By Tatiana Corbitt2 min readBookmark for later
3 Ways You Can Help a Rare Disease CaregiverI am not going to lie and say that being a rare disease parent is easy. It is often a challenge for me to get through the day. I feel... By Alex Gaudlap3 min readBookmark for later
Participating in a Focus Group as a Rare Disease PatientRecently, the Cystic Fibrosis (CF) Foundation invited me to participate in a focus group with other late-diagnosed CFers. It was a fascinating experience that led me to want to share... By Gina Miller3 min readBookmark for later
My Rare Disease Holiday Survival GuideLiving with a rare disease like narcolepsy means that I have to live my life around my symptoms. Unfortunately, we don't get the holidays off from our rare diseases! Living... By Tatiana Corbitt2 min readBookmark for later
3 Ways You Can Help a Rare Disease CaregiverI am not going to lie and say that being a rare disease parent is easy. It is often a challenge for me to get through the day. I feel... By Alex Gaudlap3 min readBookmark for later
Participating in a Focus Group as a Rare Disease PatientRecently, the Cystic Fibrosis (CF) Foundation invited me to participate in a focus group with other late-diagnosed CFers. It was a fascinating experience that led me to want to share... By Gina Miller3 min readBookmark for later
My Rare Disease Holiday Survival GuideLiving with a rare disease like narcolepsy means that I have to live my life around my symptoms. Unfortunately, we don't get the holidays off from our rare diseases! Living... By Tatiana Corbitt2 min readBookmark for later
3 Ways You Can Help a Rare Disease CaregiverI am not going to lie and say that being a rare disease parent is easy. It is often a challenge for me to get through the day. I feel... By Alex Gaudlap3 min readBookmark for later
Why Caregivers Feel IsolatedBeing a rare caregiver comes with many challenges that the community as a whole can't relate to. Though every rare family is different, I think many of us would agree... By Alex Gaudlap3 min readBookmark for laterReactions 0 reactions Comments0 comments
Creating Business Cards for Rare Disease AdvocacyThink 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 with a technician completing a medical test for you... By Jenny Jones2 min readBookmark for laterReactions 0 reactions Comments0 comments
Medical Mystery Turned Into a Rare Disease WarriorJosiah J is a wild spirited two-year-old who has familial cold autoinflammatory syndrome (FCAS). When I was pregnant with Josiah I developed a lot of complications, but a mother's intuition...Bookmark for laterReactions 0 reactions Comments1 comments
Welcome! Let's Get to Know Each Other.We are glad you are here! Please introduce yourself and let us know which rare disease impacts your or your loved one's life. ...Bookmark for laterReactions 0 reactions Comments54 replies