Rosimannuse Sihtasutus

You are
not alone.

ROSA finds you, helps you reach a diagnosis — and when treatment exists but the state won't fund it, we will.

I need help → What is ROSA?
~80 000
rare disease patients in Estonia
~15 000
Alzheimer's patients
5–7 a
average wait for diagnosis

Estonia has up to 80,000 people living with a rare disease. Over 15,000 suffer from Alzheimer's. Most are undiagnosed or untreated — not because treatment does not exist, but because the system does not reach them.

Our approach

How ROSA works

Five steps from symptom to treatment

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Recognition
You have seen doctors for years with no answer. ROSA helps recognise the pattern: long-term unexplained symptoms may point to a rare disease. Contact us directly.
1
Intake
Our patient coordinator assesses your situation within two weeks and decides whether to open a diagnostic investigation.
2
Investigation
We arrange whole genome sequencing (WGS), biomarker tests, and where needed, consultations with European Rare Disease Network (ERN) specialists.
3
Diagnosis
Every patient receives an answer — a diagnosis or a clearly explained dead end. Nobody is sent away without a response.
4
Treatment funding
If proven treatment exists but EHIF does not reimburse it, we fund treatment up to 50,000 EUR per year. Funds go directly to the medical institution.
Treatment funding

Who can apply for treatment funding?

All five criteria must be met to qualify:

🧬
Confirmed diagnosis
A rare disease (prevalence below 5/10,000) or neurodegenerative disease, including Alzheimer's.
💊
Proven treatment exists
Treatment approved by EMA or FDA with published clinical trial evidence of efficacy.
🚫
State does not fund it
EHIF has refused the application or the reimbursement delay causes irreversible harm.
📋
Financial need
Self-funding is not possible — assessed on the basis of financial circumstances.
⏱️
Time-critical
Delay demonstrably causes irreversible health damage.
Funds always go directly to the medical institution, pharmacy, or service provider. Decision within 14 calendar days.
Results

Impact metrics

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Patients in pipeline
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Diagnoses reached
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Treatments funded
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Avg days to diagnosis
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Drugs moved to state reimbursement

ROSA launched in 2026. Metrics update with every case.

About us

ROSA — Rosimannuse Sihtasutus

ROSA was founded in 2025 by Rain and Keit Pentus-Rosimannus. The foundation carries the family name and stands for hope — like a rose that grows even in difficult ground.

Behind its founding is a personal experience: a long diagnostic odyssey with a family member who had a rare disease. Years of medical appointments without an answer. That experience is in ROSA's DNA.

ROSA is not just a grant fund. We are building a diagnostic pipeline in Estonia — from symptom recognition through genome analysis, expert consultation, and treatment funding.

ROSA is on the Estonian list of tax-exempt foundations. Every donation is tax-deductible up to 1,200 EUR per year for individuals.

Funding model ROSA's unique model: donations are invested in a dividend portfolio. At least 55% of investment returns go directly to the foundation's mission. This way every euro continues working for us in the future.
Governance
RR
Rain Rosimannus
Board member, founder
Documents
📄
Articles of association
Current version 2026
 📋
Grant rules
Treatment funding criteria and procedure
 📊
Investment policy
Board-approved principles
Investment portfolio

Investment portfolio

ROSA invests donated capital in dividend-paying stocks. At least 60% of returns go to the foundation mission, up to 35% is reinvested, up to 5% covers administration.

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Portfolio value
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Annual dividend yield
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Directed to mission
60% to mission
35% reinvested
5% admin

Do you have long-term unexplained symptoms?

Contact us — submit an application form or write directly

Submit application →
ROSA assistant
Hello! I can answer questions about rare diseases, Alzheimer's diagnostics, and ROSA's support programmes.