Private Lounge
Human-reviewed membership, focused rooms, thoughtful conversation, and firm community standards.
Private support for rare-disease fathers
You carry the responsibility.
You should not carry it alone.
RareDadHQ is a private, human-led community and practical resource center for fathers raising children with rare diseases, disabilities, and medical complexity.
Founded by Brandon Prescher, a rare-disease dad raising two sons with Creatine Transporter Deficiency.
Our standard
Private by defaultHuman moderatedPractical firstFather focusedOne headquarters. Clear purpose.
Serious support for the realities rare-disease dads face.
RareDadHQ is designed to help fathers connect, prepare, navigate, and stay grounded—without turning their family's story into content.
Dad-to-Dad Matching
Find approved fathers by diagnosis, stage, or shared experience—then connect by mutual choice.
Support Locker
Focused builders and printable tools for appointments, school, insurance, hospital stays, and care planning.
Condition & Experience Hubs
Follow relevant conditions, lived-experience topics, trusted resources, and community updates.
A Private Place to Exhale
Track the load, record milestones, use the private Blowout Zone, or ask for human support.
Human Moderation
Clear privacy controls, reporting, blocking, member approval, and founder-led oversight.
Support Locker
Useful tools for high-pressure moments.
Every tool is free, private in your browser, and designed around one specific problem. No account is required.
View all Support Locker tools01
The First 30 DaysA practical starting point after a diagnosis.
Download02Specialist Appointment SheetQuestions, observations, answers, and next steps.
Download03IEP Meeting PreparationStrengths, concerns, requested supports, and follow-up.
Download04Insurance Appeal BuilderOrganize the denial, supporting evidence, calls, and deadline.
DownloadWhy RareDadHQ exists
“I’m building the place I needed when our family entered the rare-disease world.”
RareDadHQ is not a generic parenting forum, an awareness campaign, or a substitute for professional care. It is a well-run headquarters where rare-disease fathers can find practical help and other dads who understand the weight.
Brandon PrescherFounder · Rare-disease dad
Merchandise with accountability
Five percent goes back.
Each month, 5% of net merchandise proceeds is designated for a nonprofit connected to a RareDadHQ dad. Founder HQ maintains the drawing, payout, and winner history.
Join Rare Dads
Request access to the private community.
The Lounge is live now. Apply for the private community, subscribe to Rare Dad Field Notes, or choose both. Usually 1–2 useful emails a month, Field Notes is designed to respect your time. Every Lounge application is reviewed by a real person.
Already approved? Sign in to the Lounge