We’ve been fortunate to meet so many great leaders in the rare disease community. So for Father’s Day we want to celebrate a few of the impressive rare dads we’ve worked with or just benefited from knowing.

For displaying exceptional fortitude, patience, and wisdom, basically crushing it as a rare disease dad. This means making things happen, connecting all of us, and possibly telling a dad joke or two.


Hira Verma, co-founder of K.I.D.S. IQ Project and dad to Nikhil

Casey McPherson, founder of To Cure a Rose Foundation and dad to Rose

Charlie Steward, Patient Advocacy and Engagement Lead at Congenica and dad to Imogen and Jasper

Adam Johnson, author at DadVocate

Keith McArthur, CEO of Cure Grin and dad to Bryson

Luke Rosen, founder of KIF1A.ORG and dad to Susannah

Miguel Sancho, author of More Than You Can Handle and dad to Sebastian

Mike Graglia, co-founder of SYNGAP Research Fund and dad to Tony

Sanath Kumar Ramesh, CEO of Open Treatments and dad to Raghav

Matt Wilsey, co-founder of Grace Science Foundation and dad to Grace

Thank you each for all you do and all your DADication to rare,

Bo Bigelow and Daniel DeFabio