For patients and families
Your disease doesn't pause between doctor's appointments. Neither should your ability to make sense of it.
You see your specialist once or twice a year. Between those visits, you notice things, adapt things, and figure things out. None of it reaches your clinical team, and none of it helps the next family with the same diagnosis. Wimly is where that knowledge goes.
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The short version
The easy way to feel better
Every day, you collect valuable experience of how it is to live with a rare disease. Use it to improve your quality of life!
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The rare disease syndrome
Endless waiting
Years of research
No one listens
It feels like walking in mud
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A way to do something
Collecting your thoughts and observations about your life with this condition daily, forms a record of your lived experience
One minute a day is enough to form a valuable diary
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The result
Become the expert of your condition
Increase your agency
Come prepared to your doctor
Contribute to research
My life is so much easier now
Find out how Wimly would make your life better
Collecting your thoughts and observations about your life with this condition daily, forms a record of your lived experience
1. The problem
You are managing this disease every day. Your clinical team sees you twice a year.
You see your specialist once or twice a year. In that appointment, you try to describe six months of symptoms, changes, and questions. You forget half of what you meant to say. Your doctor works with whatever you remember.
This is not a memory problem. It is a design problem: the disease is happening every day, but the only structured opportunity to talk about it comes twice a year.
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What gets lost before you sit down with your doctor
The fatigue pattern that lasted three weeks. The question you rehearsed in the car and forgot when you sat down. The change you noticed in January that seemed too small to mention in March.
It is not lost because you are not paying attention. It is lost because there is no way to capture it as it happens, organise it, and have it ready for the appointment. Your doctor makes clinical decisions based on what you can remember under pressure in the time available. That is usually much less than what you actually know.
Somewhere in the world, another family already figured this out
Every day, families living with rare disease figure out the same things from scratch: when to start using a mobility aid, how to talk to an employer about the disease, how to manage fatigue that doesn't follow a pattern, how to fill in a benefit application when sustained concentration is exactly what the condition makes hardest.
Somewhere in the world, another family already worked this out. They found approaches that work. But that knowledge lives inside one person's experience, invisible to everyone else. The next family starts from nothing.
The problem is not that answers don't exist. It is that there is no way to find them.
Your caregiver notices things your clinical team never hears about
The person who cares for someone with rare disease often notices things before the patient does. The gait getting slightly worse over three months. The speech that is harder to understand by the end of the day. The change that is obvious to someone watching every day but invisible in a twice-yearly appointment.
There is no structured way to report this. No system built to receive it. It accumulates, and then it disappears.
2. The solution
How Wimly captures what you notice and puts it to use
Wimly asks one question: what did you notice? You answer in whatever form works on that day — a few words, a short paragraph, a voice note. It organises what you say, adds it to your record, and surfaces any patterns it finds over time. The minimum useful entry takes about thirty seconds. It is designed for the days when thirty seconds is all you have.
Your doctor can review your record before your next appointment, so you start the consultation with shared information rather than spending the first ten minutes trying to remember what happened. Your caregiver has their own separate record for what they observe independently. The community knowledge library holds what other families have already figured out, organised by topic and situation, searchable when you need it.
Wimly also helps with the tasks that pile up: drafting a letter to your employer, preparing a benefit application, writing a message to your clinical team. Things that sit undone because you do not have the energy to start can be handled in the same session you decide they need doing.
This is not a symptom tracker or a health diary. It is a practical tool that makes sure what you know about your own disease actually reaches the people who need it, and helps you act on what you notice.
3. The result
What a consultation looks like when your doctor has already read six months of your observations
Your doctor walks into the appointment having already read six months of your entries. You do not spend the first ten minutes trying to remember what has happened since March. You start the consultation from a shared picture of how things have been.
The things you log — when your fatigue hits, how your balance varies through the day, what seems to trigger a worse week — build into a picture of your own disease over time. Patterns that would have taken years to notice on your own emerge in months.
The gait change your caregiver has been watching for three months reaches your clinical team before the appointment, not as an afterthought in the last two minutes.
Someone in the community worked out how to talk to their employer about their diagnosis — what to disclose, when, and how to ask for the right accommodation. They logged it. You find it in a search before you need to have that conversation yourself.
What you have learned from years of living with this disease does not disappear. It is saved, and available to the next family who gets the same diagnosis. Your experience helps people you will never meet.
Questions
What does a check-in actually look like?
Wimly asks you one question: what did you notice? You answer in whatever form works on that day — a few words, a sentence, a voice note. It organises what you say, adds it to your record, and may ask a short follow-up. The minimum useful entry takes about thirty seconds.
How often should I check in?
As often as is useful to you. There is no required frequency. Some people check in daily, others when something notable happens. The platform is designed for the days when thirty seconds is all you have.
Does my neurologist actually see my observations?
Only if you choose to share them. You control what your clinical team can see. If you connect Wimly to your clinical care, your doctor can review your record before each appointment. If you do not, your observations stay private to you.
Can I contribute to research?
Yes — if you choose to. Wimly gives you a structured way to indicate willingness to contribute de-identified observations to research, and to be contacted about relevant clinical trials. Your consent decisions are yours to set and change at any time.
How a check-in feels
A day's observation, start to finish
A short SCA observation session — balance and fatigue — in about thirty seconds. The platform asks one question and works with whatever you give it.
Good evening. What did you notice today?
My balance was off — trouble on the stairs at work, I was holding the rail the whole way. And tired earlier than usual, around two.
Got it — trouble on the stairs, holding the rail, and tiredness earlier than usual. The stairs — you said your balance was off. Was that going up, going down, or both?
Both directions, but worse going down.
Thanks — worse going down. There's a quick way to mark how steady you felt. Pick the phrase that fits best, or skip if none of them do.
- Managed fine but noticed something different
- Needed extra care or support
- Had to stop or couldn't continue
- Skip this
I've noted 'Needed extra care or support' — is that right?
Yes, that's right.
Here's what I have for today. Balance — 'Needed extra care or support', stairs, worse going down. Fatigue — earlier than usual, around two. Does this look right?
That's right.
Done. Your consultation package was updated with this entry. Goodnight.
Demonstration only — this conversation is hand-scripted to show how Wimly's interaction patterns work. The platform is in development; no data is captured here.
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Wimly v1 is approaching. Founding supporters get access on day one and a role in shaping how the platform develops.
Find out what Wimly would look like for your situation
A short self-assessment that maps your situation to the parts of Wimly most relevant to you. Takes about two minutes.
Begin self-assessmentLearn more
- Why this was built The case for Patient Intelligence, and the personal story behind it.
- How a check-in actually feels A short demonstration of a real observation session from start to finish.
- How clinicians use Wimly What your clinical team sees, when they see it, and entirely on your terms.
- Patient organisations and Wimly How patient organisations are supporting and embedding Wimly for their communities.
- The research case for patient-generated data Why continuous, structured lived-experience data matters for rare disease research — and what patients make possible.