Rare disease apps for families: what to look for
Rachel Ho
Daily Care
Rare disease apps for families: what to look for
When you care for someone with a rare condition, keeping track of everything can become a second job.
There are now lots of apps that promise to help. Some are built for adults managing their own health. Some are built for one specific condition. A few are built for families and carers.
This guide covers what to look for, so you can choose something that fits your family, whether that is an app, a spreadsheet or a notebook.
Quick answer: a good rare disease app for families should be built for carers as well as patients, quick to use on a bad day, easy to share with your care team, and clear about what happens to your data. Be cautious about any app that suggests a diagnosis, judges how serious something is, or tells you what treatment to try, unless it is regulated as a medical device.
Who is it built for?
Many health apps are built for one adult tracking their own symptoms. Rare disease care often looks different:
a parent or carer is doing the tracking
several people may be involved, such as both parents, grandparents or school
the person being cared for may not be able to describe what is happening
It is worth checking whether the app works for the way your family actually manages care.
Is it easy to use on a bad day?
The best tool is the one you will actually keep using.
Ask yourself:
Can I add something in under a minute?
Can I add it later if I am busy at the time?
Can I describe things in my own words, or do I have to pick from fixed lists?
Does it work when I am tired, on my phone, with one hand?
If it feels like filling in a form, it may not last past the first few weeks.
Can you share it in a useful way?
Keeping notes is only half the job. The other half is getting the right information to the right person.
Look for:
a clear summary you can bring to appointments or send ahead
something you could share with a school, a new specialist or a benefits assessor
a way to get a copy of your information, such as a PDF summary or a full copy on request, if you stop using the app
What happens to your data?
Health information is personal. Before you start, it is worth reading the app's privacy notice and checking:
where your data is stored, and who can see it
whether it is shared with, or sold to, other companies
whether it is used to train AI models
whether you can delete your account and your data
who is responsible for your data, and how to contact them
In the UK, most organisations that handle personal data have to pay a fee to the Information Commissioner's Office (ICO), which lists them on a public register. You can search the ICO register to check.
Does it give medical advice?
This is one of the most important things to check.
Some apps help you keep and organise information. Others go further: they suggest a diagnosis, judge how serious or urgent something is, or tell you what treatment to try.
In the UK, software can count as a medical device if its purpose is to help diagnose, monitor or treat a condition. Medical devices are regulated by the Medicines and Healthcare products Regulatory Agency (MHRA), and one sign an app has been through this is a UKCA or CE mark. Rules differ elsewhere: in the US, the Food and Drug Administration (FDA) regulates medical devices.
If an app suggests a diagnosis, rates how serious something is or suggests treatment, and you cannot see any sign that it is regulated, treat what it says with caution. Your care team is always the right place for medical advice.
Does it fit the rest of your life?
A few practical questions:
Does it work on the phone you already have?
Does it cost money, now or later?
Will it cope as things change, such as new diagnoses, new specialists or moving from children's to adult services?
If the app closed down, could you keep your information?
What about not using an app at all?
Plenty of families manage well with a notebook, a folder of letters and a notes app on their phone. That is completely fine.
If you go that route, a few simple habits help:
date every note
keep letters in date order, with clear names
keep a running list of questions for the next appointment
Our guide to what to track between rare disease appointments covers this in more detail.
A simple checklist
Before choosing an app, check that:
not doneit is built for carers and families, not only individuals
not doneyou can add things quickly, in your own words
not doneyou can share a clear summary
not doneyou can get a copy of your information
not donethe privacy notice is clear about storage, sharing and deletion
not doneif it suggests a diagnosis, judges how urgent something is or suggests treatment, it shows it is regulated as a medical device
What to remember
There is no single right tool. The right one is easy enough to use on a bad day, makes sharing simpler, and is honest about what it does with your information and what it does not do.
How Rarevia can help
Rarevia is being built for rare disease families and carers.
Families will be able to say or write what is happening, in their own words, and Rarevia keeps it organised in one place. A summary of how things are, recent updates and your questions are ready to share whenever you need them.
Rarevia does not diagnose, judge how serious something is, or suggest treatment. Where it shows information about a condition, it is general information from named sources such as Orphanet and MedlinePlus, not advice about anyone in particular. Decisions about care stay with your care team. Rarevia helps you keep the story in one place, so it is easier to give your care team the full picture. It works on any phone, with nothing to download from an app store. You can read how we handle your data in our privacy notice.
If that sounds useful, join the waitlist and help shape Rarevia as it is built.
Sources and further reading
This article is general information, not medical or legal advice.
Information Commissioner's Office: Register of fee payers
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