Rare Disease Support App
Advoca keeps every specialist appointment, symptom, and test result in one searchable record, so you can stop repeating your history and start building the case for the right diagnosis and treatment.
4.8 across 35 ratingsWhen your condition doesn't fit a textbook
A rare disease (sometimes called an orphan disease) is any condition that affects a small number of people relative to the general population. In the UK, that means fewer than 1 in 2,000 people; in the US, fewer than 200,000 people nationwide. Despite each condition being uncommon on its own, there are over 10,000 known rare diseases, and together they affect roughly 1 in 17 people. Most are genetic, many appear in childhood, and the majority have no approved treatment.
Rare diseases show up in almost every medical specialty. Some cause chronic pain, fatigue, or neurological symptoms. Others affect organs, blood, or the immune system. Because symptoms often overlap with more common conditions, patients are frequently told there's nothing wrong, or they receive a diagnosis that doesn't quite fit. The average person with a rare disease waits five years before getting the correct diagnosis, and many see four or more different specialists along the way.
Living with a rare disease means managing uncertainty. Treatments may be experimental. Appointments are spread across different hospitals and departments. Each new specialist starts from scratch because no single doctor holds the full picture. Over time, patients become the only continuous thread in their own care, carrying knowledge that exists nowhere else in one place.
On average, people with a rare disease wait five years for a correct diagnosis, see four or more specialists, and 40% receive at least one wrong diagnosis before the right one.
Your medical history is scattered across years, hospitals, and specialties
When you have a rare disease, every appointment carries weight. A specialist might mention a test result, adjust a theory, or suggest a referral in passing. If you don't capture it, it's gone. Months later, a different doctor asks the same questions you've answered dozens of times. You try to recall what was said, which medications were tried, and when symptoms first appeared. Important details slip through the cracks. Meanwhile, your records are split across hospitals, departments, and years of correspondence that nobody has time to read in a fifteen-minute consultation.
One continuous record changes the conversation.
Keeping one continuous, searchable record changes things. When you can show a new specialist exactly what's been tried, what was said, and how your symptoms have evolved, you skip the repetition and get straight to what matters. Advoca gives you that record. It captures your appointments, tracks your symptoms over time, and lets you search across everything, so the next doctor you see gets the full picture from the start.
How Advoca helps with rare diseases
Never lose what a specialist said
Rare disease appointments are often dense with medical language, new theories, and next steps. It's hard to absorb everything in the moment, especially when you've waited months to be seen. Record any appointment on your phone and get a clear summary afterwards, with key points, action items, medications discussed, and follow-ups separated out. The full transcript is there if you need the exact wording. It works offline, so even in a hospital basement with no signal, you're covered.
- Structured summaries pull out key points, medications, and next steps, so you don't have to scribble notes while listening to complex explanations.
- Full searchable transcripts mean you can check exactly what a specialist said months later, when another doctor asks.
Build the record no single doctor holds
Between appointments, your symptoms, energy, medications, and side effects keep changing. But unless you write them down, that detail disappears. The health journal lets you log whatever matters to you, in your own words, as often as you like. Over weeks and months, you build a detailed timeline that shows patterns a doctor couldn't see from a single visit. When you have a rare disease, a record like this can be the difference between being heard and being dismissed.
- Write it your way. Track symptoms, medications, energy, mood and side effects in whatever way makes sense for your condition.
- A continuous timeline builds evidence that spans the gaps between specialist appointments, showing how things change over months.
Find reliable information when your condition is rare
When your condition affects a small number of people, reliable information is hard to find. Search engines return forum posts, outdated articles, and pages that don't apply to you. Advoca answers your questions using trusted sources: curated charities, patient organisations, and verified medical references. Every answer shows exactly where it came from, so you can judge for yourself. For deeper research, the premium tier searches published medical papers and explains them in plain language.
- Answers come from verified sources like partner charities and medical references, not the open web, so you can trust what you read.
- Research paper search finds published studies about your specific condition on PubMed and explains them without the jargon.
Walk into any new specialist prepared
Seeing a new specialist who knows nothing about your history is one of the hardest parts of having a rare disease. You have fifteen minutes to explain years of symptoms, tests, and treatments. Advoca helps you prepare: write notes before the appointment, set reminders, and draft a letter to the clinician summarising your history. When you walk in prepared, you spend less time repeating yourself and more time on what actually matters.
- Pre-appointment notes and reminders help you organise your questions so nothing gets forgotten in a short consultation.
- Draft a letter to a new specialist summarising your history, so they understand your case before you even sit down.
How Advoca works for rare diseases
- 1Record your appointmentsHit record on your phone during any specialist consultation. Afterwards, get a clear summary with the key points, next steps and medications, plus the full transcript.
- 2Track symptoms between visitsLog how you feel in your own words, as often as you like. Over time, build a detailed record that shows patterns no single appointment could reveal.
- 3Prepare for the next specialistPlan your questions, review what's been said before, and draft a summary for any new doctor. Walk in ready, with your full history at your fingertips.
Built by doctors, grounded in evidence
This page was written by Dr Shyam Dhokia (MB BChir, Cambridge) and medically reviewed by Dr Michael Trueman (MB ChB, Birmingham), both former NHS doctors and the co-founders of Advoca. It was last reviewed on 8 July 2026 and is kept current as clinical guidance and app features change.
- NHS England, 'The UK Rare Diseases Framework' — defines rare diseases, outlines the coordination challenges patients face, and sets out the four priorities for improving care including faster diagnosis and better coordination.
- NIH GARD, 'About Rare Diseases' — over 10,000 rare diseases identified, fewer than 5% have approved treatments, approximately 25–30 million Americans are affected.
- EURORDIS, 'The Voice of 12,000 Patients' — average 5-year diagnostic delay, 70% wait more than one year for diagnosis, patients see an average of 4+ healthcare professionals before diagnosis.
- Genetic Alliance UK, 'The Hidden Costs of Rare Diseases' — 40% of rare disease patients receive at least one misdiagnosis; uncoordinated services across providers create significant mental health burden.
Your data is encrypted in transit and held on encrypted servers in the UK and EU, served over HTTPS. You don't need to share any identifying details to use Advoca, and appointment recordings stay on your own device — the audio is never uploaded to our servers.
Advoca helps you record, understand and organise your care. It is not a substitute for professional medical advice, and it does not diagnose conditions or make treatment decisions — always speak to a qualified healthcare professional.
Advoca's assistant transcribes, summarises and explains your health information, grounded in trusted medical sources and overseen by our clinical team. It does not diagnose or replace your doctor — and, like any AI, it can occasionally get things wrong, so we always show you the sources and full transcript behind its answers.
Your questions, answered
What is a rare disease?
A rare disease is any medical condition that affects a small number of people. In the UK, that means fewer than 1 in 2,000; in the US, fewer than 200,000 people nationwide. There are over 10,000 known rare diseases, and while each one is uncommon, together they affect roughly 1 in 17 people. About 80% are genetic in origin, and many first appear in childhood. Because each condition is uncommon, research funding is limited and fewer than 5% of rare diseases have an approved treatment. Sources: NIH GARD (US); NHS England (UK).
What's the best app for managing a rare disease?
Advoca is built for people who coordinate care across multiple specialists and need a single, reliable record. It lets you record appointments and get structured summaries, track symptoms in a health journal, search trusted medical sources for answers about your condition, and prepare for new doctors with notes and draft letters. It's free to use, designed by NHS doctors, and your data stays private under GDPR and HIPAA-aligned standards. For rare disease patients specifically, having one searchable place for years of appointments and symptoms means you never have to start from scratch with a new specialist.
How long does it take to get a rare disease diagnosis?
On average, five years. Research from EURORDIS found that 70% of rare disease patients wait more than one year for a diagnosis, and many wait much longer. A study cited by the NIH found that 25% of patients wait between five and thirty years. During this time, 40% receive at least one incorrect diagnosis. The delay happens because rare disease symptoms often mimic more common conditions, and most doctors will only see a handful of cases in their career. Keeping a detailed record of your symptoms, appointments, and test results can help shorten this journey by giving each new specialist a clear starting point. Sources: EURORDIS; NIH GARD (US).
How can I prepare for a specialist appointment?
Write down your main questions beforehand, in order of priority. Bring a summary of your medical history: key dates, previous diagnoses, medications tried, and test results. If you've seen other specialists, note what they said. Having this information organised saves time and helps the doctor focus on what's new rather than piecing together your past. Advoca can help you do this: you can review summaries from previous appointments, draft a letter summarising your history, and write appointment notes so your questions are ready when you walk in.
Can an app help manage a rare disease?
Yes. The main challenges of living with a rare disease are coordination (seeing multiple specialists who don't share records), information (finding reliable details about an uncommon condition), and continuity (remembering what was said across years of appointments). An app that records consultations, tracks symptoms over time, and provides answers from verified sources addresses all three. Research from Genetic Alliance UK and EURORDIS highlights that fragmented care and poor information access are major burdens for rare disease patients. A structured personal health record won't replace medical expertise, but it helps you carry your story accurately between the people providing your care. Sources: Genetic Alliance UK; EURORDIS.
How do I keep track of multiple specialists?
The key is one central record that covers all your appointments, regardless of department or hospital. After each visit, note what was discussed, what was recommended, and what needs to happen next. Record appointments if you can, so you have the exact wording. Track your symptoms between visits so you can show changes over time. Advoca does this in one place: recorded appointments are transcribed and summarised, journal entries build a timeline, and you can search across everything when preparing for your next visit. Instead of carrying folders or relying on memory, you have a searchable history that any specialist can benefit from.
Explore related conditions and features
Advoca can support you across other long-term conditions, and the features that help you manage them.
Chronic illness
Track symptoms, medications, and appointments across any long-term condition.
Learn more →Cancer
Record consultations, understand medical terms, and keep every scan and next step in one place.
Learn more →Become an expert on your own care.
Free to download, built by doctors, and private by design. Start in minutes.