Still searching
For families trying to organize tests, symptoms, referrals, and next steps.
RareFriends™
RareFriends™: find your circle in the rare disease journey.
A safe, opt-in space for people and families affected by rare diseases to find others, join smaller circles, and share only what they choose.
What RareFriends™ is
Support and community without exposing sensitive information
RareFriends™ does not replace medical care, genetic counseling, or the work of patient associations. It is a peer-to-peer community layer designed to help people feel less alone and find others going through similar questions.
Organizations connect resources, programs, and collective efforts. RareFriends™ connects people: families still searching for diagnosis, adults living with a rare condition, caregivers, and members who want to learn genetics without fear.
Opt-inparticipation and connections only with consent
Circlessmaller spaces by journey stage, role, topic, or location
Privategenetic reports and sensitive data never public by default
Small circles, not a giant public forum
RareFriends™ is organized around more careful groups, clear rules, moderation, and privacy control.
New diagnosis
For people who need to understand concepts, find orientation, and talk with others who have been through that stage.
Genetics without fear
For learning about variants, panels, inheritance, carrier status, VUS, and sequencing in accessible language.
Families and caregivers
For parents, partners, and caregivers who need practical and emotional support.
Control
Your story, your control
RareFriends™ lets members participate with a nickname, show only their role or journey stage, hide diagnosis details, and keep genetic reports private.
Private to me
Reports, files, variants, full medical history, and sensitive data.
Visible to circles
Nickname, role, general journey stage, and broad topic interests.
After accepting a connection
First name, story, contact preference, and optional diagnosis.
Pocket Genes
The app as a safer entry point
Pocket Genes is one tool inside the RareFriends™ ecosystem: it helps organize reports, learn basic concepts, and create safer summaries for community participation.
Report organizer
Upload and organize PDFs, panels, providers, dates, and notes.
Genetics Learn
Understand variants, panels, inheritance, VUS, carrier status, and sequencing.
Appointment questions
Prepare better questions for doctors, genetic counselors, or patient organizations.
Privacy
Never public by default
The community exists to support people, not expose them. Every visibility level should be clear, reversible, and easy to understand before sharing.
Private reports
Genetic reports, exact variants, phone number, address, national ID, and full medical records are not public by default.
Safe summary
A community profile can say what someone is looking for without exposing private genetic data.
Block or leave
Members can leave circles, block contacts, or report situations at any time.
Community safety rules
RareFriends™ does not diagnose, prescribe treatments, or let community conversations replace conversations with health professionals.
- No diagnoses, treatments, miracle cures, or medical pressure.
- No sharing another person’s medical information.
- Genetic reports private by default, with explicit consent for any connection.
- Moderation against harassment, misinformation, and exposure of sensitive data.
Enter RareFriends™ through Pocket Genes
Download Pocket Genes to start organizing reports and preparing safer community participation.