I'm Brandon Prescher. I'm raising two sons with Creatine Transporter Deficiency.
When our family entered the rare-disease world, I learned how quickly a dad can become a researcher, advocate, care coordinator, paperwork manager, driver, employee, partner, and the guy everyone expects to stay steady.
I could find medical pages, awareness organizations, and broad parent groups. What I couldn't find was one serious place built for dads—a place to ask the questions we don't always say out loud, prepare for the next appointment or insurance fight, and talk with somebody who doesn't need the whole story explained first.
CTD is our family's story. It isn't the limit of this mission.
RareDadHQ is for biological, adoptive, step, foster, and bereaved dads—and active father figures—navigating a diagnosis, the diagnostic odyssey, disability, chronic or terminal illness, medical complexity, or the loss of a child.
The free tools are live. The private Lounge is live with human-reviewed admission, focused rooms, dad matching, Buddy connections, wellbeing tools, Condition and Experience Hubs, and real privacy controls.
I review the messages and feedback that come through this site. What dads need will keep shaping what gets built next.
Brandon Prescher
Founder and rare-disease dad