Methodology
RIBETÉR is the public directory of rare-disease care providers in Hungary: it shows on a map and in a list where to turn with a given rare disease.
What is RIBETÉR?
RIBETÉR helps people living with a rare disease, their families and healthcare professionals find the relevant care providers in one place, in plain language. Search works at the disease level: every disease is identified by its international ORPHA code, so differences in naming do not get in the way of finding results.
This site is a display surface only. Data is collected, verified and maintained by RIROSZ; RIBETÉR publishes that data without modification.
Care provider types
Every care provider is classified against a closed list of types. The type tells you what role the given place plays in rare-disease care:
- Expert center
- A designated rare-disease center: it establishes diagnoses, provides complex care and professionally supports the work of other care providers.
- Specialist care center
- Provides ongoing specialist care for a given disease or disease group, typically in cooperation with an expert center.
- Cooperative care site
- Takes part in care close to the patient's home under the guidance of an expert or specialist care center — it is not an independent diagnostic center.
- Diagnostic point
- Performs targeted examinations to establish a diagnosis; it does not necessarily provide long-term care.
- Patient organization
- Not a healthcare provider: it supports affected people and their families with information, community and advocacy.
- Other
- A provider or service relevant to people living with a rare disease that does not fit the categories above.
The role of RIROSZ
RIBETÉR is operated by RIROSZ — the Hungarian National Alliance of People with Rare and Congenital Disorders. Provider data comes from the institutions themselves and passes through RIROSZ's verification process before it appears on the site.
If incoming data does not meet the data handover requirements, we never correct it or fill gaps by guessing: the affected data is returned to RIROSZ with an error report.
Verified and unverified data
Every piece of information shown carries an openly disclosed verification status. The "Verified" badge means the data has been confirmed by the institution concerned or by RIROSZ. "Unverified" data has not yet gone through this confirmation, and the "Pending" status indicates that confirmation is currently in progress.
The statuses are never collapsed into one. For verified data we display the verification date; for unverified and pending data the last-updated date is shown instead — so you can always judge how fresh a given piece of information is. Please always confirm with the institution or your treating physician before making care decisions.