A living memory for rare disease families

A living memory for rare disease families

Rarevia is a smart care companion that helps families capture what happens, make sense of changes, and prepare with the right context when it counts.

Rarevia is a smart care companion that helps families capture what happens, make sense of changes, and prepare with the right context when it counts.

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OUR MISSION

We see life after diagnosis through the scattered pieces families manage every day. Rarevia turns those pieces into a living care memory families can understand, prepare from, and use again.

How does it work?

Drop in what happens day to day. Rarevia organises them into memory, context, questions, summaries and evidence you can use again.

Capture

Record a quick voice note, type a short update, or upload a letter, screenshot or form when something happens, without needing to organise it first.

Organise

Rarevia helps analyse what you captured, categorise it, link it to the timeline, and update the live care summary when it changes the current picture.

Explain

When an observation connects to condition knowledge, Rarevia explains what it may relate to, why it may matter, and what may be worth watching or asking.

Remind

Rarevia reminds families about upcoming appointments, deadlines, school meetings, follow-ups and unresolved tasks.

Prepare

Rarevia pulls together relevant notes, changes, documents, questions and evidence already captured before a meeting or appointment.

Coordinate

Invite trusted family members or carers to follow the right parts of the care picture, so updates, reminders and context are not trapped with one person.

What Rarevia gives back

What Rarevia gives back

Rarevia is being built to reduce the invisible work of holding everything together. Capture what happens once, and Rarevia helps remember it, make sense of it, and bring it back when it matters.

Rarevia is being built to reduce the invisible work of holding everything together. Capture what happens once, and Rarevia helps remember it, make sense of it, and bring it back when it matters.

Less to hold in your head

Rarevia keeps memory of the small things as they happen, so they do not have to live only in your brain.

Learn what matters

Rarevia helps families understand the condition as life unfolds, from plain-language basics after onboarding to contextual guidance when new observations or questions come up.

A clearer living picture

Rarevia keeps a living snapshot of the diagnosis, how it affects this person, what has changed recently, what support is in place, and what still needs follow-up

Ready when asked

Rarevia structures observations, episodes, concerns, documents and daily life impact over time, so families can bring clearer answers to appointments, school meetings and support conversations.

Why Rarevia Exists

Rachel Ho

Founder

Rachel Ho

Founder

Rachel has a background in Prenatal Genetics and Fetal Medicine, with early experience in the fertility industry and six years working in early-stage healthtech.

Rarevia began after seeing families close to her navigate rare genetic disease across different healthcare systems, including families affected by Spinal Muscular Atrophy (SMA) and Epidermolysis Bullosa (EB). The conditions were different, but the burden looked painfully similar:

Searching for reliable information, finding the right care, remembering what happened, organising documents, advocating for support, proving need, accessing funding, and adapting life around a condition very few people understood.


Rarevia is built to make that lifelong journey clearer, more organised and easier to carry.

Rachel has a background in Prenatal Genetics and Fetal Medicine, with early experience in the fertility industry and six years working in early-stage healthtech.

Rarevia began after seeing families close to her navigate rare genetic disease across different healthcare systems, including families affected by Spinal Muscular Atrophy (SMA) and Epidermolysis Bullosa (EB). The conditions were different, but the burden looked painfully similar:

Searching for reliable information, finding the right care, remembering what happened, organising documents, advocating for support, proving need, accessing funding, and adapting life around a condition very few people understood.


Rarevia is built to make that lifelong journey clearer, more organised and easier to carry.

Rachel has a background in Prenatal Genetics and Fetal Medicine, with early experience in the fertility industry and six years working in early-stage healthtech.

Rarevia began after seeing families close to her navigate rare genetic disease across different healthcare systems, including families affected by Spinal Muscular Atrophy (SMA) and Epidermolysis Bullosa (EB). The conditions were different, but the burden looked painfully similar:

Searching for reliable information, finding the right care, remembering what happened, organising documents, advocating for support, proving need, accessing funding, and adapting life around a condition very few people understood.


Rarevia is built to make that lifelong journey clearer, more organised and easier to carry.

Join the early interest list today

Join the early interest list today

Get early updates, help shape Rarevia, and be among the first to try it when we launch.

Get early updates, help shape Rarevia, and be among the first to try it when we launch.

Get early updates, help shape Rarevia, and be among the first to try it when we launch.

Make sense · Carry less · Use what happened

Make sense · Carry less · Use what happened


Rarevia is not a doctor, diagnosis tool, emergency service, therapy product, treatment recommendation engine, or eligibility guarantee. It is being built to help families organise information, make sense of what is happening, prepare better questions, and understand possible routes to investigate.

Rarevia is not a doctor, diagnosis tool, emergency service, therapy product, treatment recommendation engine, or eligibility guarantee. It is being built to help families organise information, make sense of what is happening, prepare better questions, and understand possible routes to investigate.

© 2026 Rarevia. All rights reserved.

© 2026 Rarevia. All rights reserved.

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For Organisations

For Organisations

Supporting rare disease families or communities?

Rarevia is not a doctor, diagnosis tool, emergency service, therapy product, treatment recommendation engine, or eligibility guarantee. It is being built to help families organise information, make sense of what is happening, prepare better questions, and understand possible routes to investigate.

Rarevia

Rarevia

Rarevia