Finding rare-disease expertise in Spain

Key rules

• Referral: Your treating specialist refers you, with approval from your regional health service. You cannot apply directly.
• Nationality: What counts is public health entitlement, not nationality.
• Registries: Your hospital or region normally enters you in a registry. You do not self-register.
• Cross-region care: If the centre is in another region, the cost is handled between the regions, not by you.

Start with your treating specialist

You cannot apply to a reference centre yourself. Your treating specialist at your home hospital makes the referral, and your regional health service approves it. Ask the specialist two things: does your condition have a national reference centre, and should you be referred to one?

Access depends on public health entitlement, not nationality. If you have a Spanish health card, you can be referred.

National reference centres (CSUR)

CSUR are hospital units designated by the Ministry of Health, together with the regions, for rare or complex conditions that need concentrated expertise. A designation lasts for a limited period and is then re-evaluated, so the list of centres changes over time.

The Ministry of Health website has a CSUR catalogue. You can search it by condition and by centre. Bring what you find to your specialist so the conversation starts from a named hospital.

If the centre is in another region, the cost of your care there is handled between the regions through the Fondo de Cohesión Sanitaria. You do not pay for this or arrange it. Procedures differ by region and hospital, so ask your hospital's referral office how it works locally.

European Reference Networks (ERN)

Some Spanish hospitals are full members of European Reference Networks. These link specialist centres across Europe. The European Commission publishes a directory of the networks, where you can see which Spanish hospitals belong to which network. A CSUR designation and ERN membership are separate things, so check each one for your condition.

Registries

Spain has a national rare-disease information system, run by the Instituto de Salud Carlos III, and a national rare diseases registry. Regions also keep their own registries. You are usually included through your treating hospital or region, not by signing yourself up. Ask your hospital whether you are on the regional registry and the national one.

The same institute also runs a rare-disease research network, CIBERER, and the Ministry of Health has information pages on rare diseases.

Support groups

FEDER, the Spanish Federation of Rare Diseases, runs a free information and guidance helpline. Call it for orientation on services and groups.

For a specific condition, look for its national federation. Examples include coeliac disease, diabetes, Alzheimer's, Parkinson's, multiple sclerosis, cystic fibrosis and cancer. Search for the federation by name. Its website will usually list local associations, which offer peer support and practical advice. The resource and checklist below list more places to start.

Checklist

• Ask your treating specialist whether your condition has a national reference centre (CSUR) and whether you should be referred.

• Search the Ministry of Health's CSUR catalogue by condition and centre to see which hospitals are designated.

• Ask your home hospital to request the referral through your regional health service, because you cannot apply directly.

• Find the national federation for your condition by searching its name online, and contact a local patient association for peer support.

Patient associations and peer support in Spain

• FEDER, the Spanish Federation of Rare Diseases: Call its information and guidance helpline (SIO) if you have a rare disease, and ask which patient association covers your condition.

• Your treating hospital or regional health service: Ask to be added to the rare-disease registry.

• National federation for your condition: Search by name for the federation for your condition: FACE (coeliac disease), FEDE (diabetes), CEAFA (Alzheimer's), Federación Española de Párkinson, Esclerosis Múltiple España, Federación Española de Fibrosis Quística, AECC (cancer), Fundación Española del Corazón or FENAER (asthma and lung disease).

• Local English-language support groups: Look for English-language meetings and peer groups in coastal areas and big cities such as Costa del Sol, Costa Blanca, Barcelona, Madrid and the Balearics. Larger federations usually work in Spanish only.

Frequently asked questions

Can I be referred to a CSUR centre if I am not Spanish?

Yes, nationality does not matter, because access depends on having public health entitlement and a health card.

Who pays if the CSUR centre is in another region?

The cross-region care is funded through the Fondo de Cohesión Sanitaria, a national fund for this purpose. Your hospital and regional health service handle the paperwork. Ask your specialist to confirm how this works in your region.

Can I register myself in a rare-disease registry?

No, patients are usually added to registries by their treating hospital or region, not by self-registration. Ask your specialist whether you are included in the regional registry and in the national one run by the Instituto de Salud Carlos III (ISCIII).

Does a CSUR centre mean the same as a European Reference Network hospital?

No, they are different systems, although a hospital can be in both. CSUR centres are designated nationally by the Ministry of Health for a limited period, while European Reference Networks link specialist hospitals across Europe.