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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 experience that led me to want to share...

By Gina Miller

3 min read

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 the holidays off from our rare diseases! Living...

By Tatiana Corbitt

2 min read

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 me to get through the day. I feel...

By Alex Gaudlap

3 min read

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 experience that led me to want to share...

By Gina Miller

3 min read

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 the holidays off from our rare diseases! Living...

By Tatiana Corbitt

2 min read

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 me to get through the day. I feel...

By Alex Gaudlap

3 min read

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 experience that led me to want to share...

By Gina Miller

3 min read

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 the holidays off from our rare diseases! Living...

By Tatiana Corbitt

2 min read

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 me to get through the day. I feel...

By Alex Gaudlap

3 min read

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 different, I think many of us would agree...

By Alex Gaudlap

3 min read

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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 with a technician completing a medical test for you...