Cheers to the Rare Moms on Mother’s Day

One year ago - Mother’s Day 2020, I was two and a half months away from meeting my third and final baby girl. 2020 was a tough year for everyone with the COVID pandemic and living our new normal, but it was about to hit a peak for me when I got news just a month later I would have never fathomed. Read a message from Valarie, baby Delila's mom
Grace Whiting, National Alliance for Caregiving

Grace Whiting on Caregiving

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On Rare Disease Day 2019, our team had the honor of speaking with Grace Whiting, president and chief executive officer of the National Alliance for Caregiving. Her compassion and professional energy to help caregivers is profound. We present the unedited words Grace shared with us here.
Marshall Summar, M.D., CNRDI

Connecting More People to Optimal Rare Disease Care

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An update on our partnership with Children's National Rare Disease Institute.
A man in a blue sweater looking into camera

Meet Damian

When Damian was 18 years old and a freshman in college, he woke up with stabbing pain on his left side. He skipped class and stayed in bed, only getting up to use the bathroom. Eventually felt better. In retrospect, he thinks now that was his first stone.
Rare Disease Caregiver Flyer Thumbnail

Rare Disease Caregiving in America

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The National Alliance for Caregiving (NAC) in partnership with Global Genes set out to examine the issues and challenges facing those who provide unpaid care to someone with a rare disease.