Our Programs

Five ways we show up — quietly, consistently, and without an agenda.

Every VENE program is free for families. We exist because the rare-disease journey is too long to walk alone — and too important to be reduced to a medical chart.

Program

VENE Companion

A gentle space to be heard — right now.

When you need somewhere to start, our support companion listens with empathy. It is not a therapist or crisis line, and it never replaces a real person from our team — but it can help you sort through what you are carrying and point you toward VENE programs, guides, and people who can help.

Beta release. The VENE Companion is still learning — responses may be inaccurate or incomplete. Always verify important information with your care team or email info@vene.life.

Talk to the companion

What is included

Available anytime on the Get Help page — no appointment needed
Empathetic listening with practical caregiving ideas when you want them
Gentle pointers to VENE circles, guides, prayer, and respite resources
Crisis language triggers a fixed response directing you to 988

Program

Emotional Support Circles

You are not meant to carry this alone.

Small, led groups — by video or in-person where available — where parents and caregivers can say the hard things out loud. Led by licensed clinicians and trained parent peers. No advice unless you ask. No "you should." Just the room.

Join a circle

What is included

Weekly caregiver circles (6–10 parents)
Bereavement circle for families who have lost a child
Siblings space — for the brothers and sisters, too
1:1 peer matching for newly diagnosed families

Program

Treatment Navigation

Walk into the next appointment less afraid.

Plain-language guides to novel therapies, gene therapies, clinical trials, and second opinions. We do not give medical advice. We help you ask the right questions at the right time, and we help translate what the doctor said.

Browse treatment guides

What is included

Plain-language guides to novel treatments (50+ topics)
Clinical trial search help — in language you can understand
Second-opinion coordination
Doctor-visit prep sheets (print and bring)

Program

Faith & Hope Ministry

A quiet place to pray, breathe, and be held.

For families who find strength in faith — and for those who are still figuring out what they believe. We offer prayer, scripture for tired nights, devotionals written by parents who get it, and a chaplain available to listen.

Request prayer

What is included

Daily devotional — short, gentle, honest
Private prayer request wall (always optional)
Chaplain line — call or text, no appointment needed
Memorial services for children we have lost

Program

Respite Care Resources

A few hours of rest can save a family.

We understand how important respite is — and how hard it can be to find when your child has complex medical needs. VENE does not provide respite care directly. We help families locate trusted state and national resources so you can find coalitions, programs, and providers near you.

VENE is not partnered with ARCH. We share this link as a trusted starting point. Programs, eligibility, and providers are managed by state and local organizations — always confirm details directly with them.

Find respite in your state

What is included

State respite coalition and Lifespan Respite contacts, organized by state
Help finding in-home, center-based, or emergency respite options
Links to voucher programs and provider registries where available
Recommended starting point: ARCH National Respite Network — a leading U.S. caregiver resource

Not sure where to start?

That's okay. Tell us a little about your family, and we'll point you to the program that fits — at your pace, in your time.

Talk to the VENE companion