Information for Patients

What to expect at your appointment

Amyloidosis Clinic

Fever Clinic

TTR Clinic

Instructions for 24-hour urine collection

Travel costs

• NHS England Healthcare Travel Costs Scheme

Overseas and non-NHS entitled patients

The Royal Free Hospital and the National Amyloidosis Centre welcome overseas patients. European Union residents may be entitled to an NHS assessment in the UK under EU reciprocal arrangements for medical care that is not available locally (EU S2 form). 

Non‑NHS entitled patients are welcome but are liable to charges.

Understanding amyloidosis

Amyloidosis is the general name for the disease where abnormal protein deposits (known as amyloids) accumulate in tissues and organs throughout the body.

These proteins exist in a fibre‑like form (amyloid fibrils, amyloid deposits) that build up and interfere with the structure and function of affected organs throughout the body.

There are various types of amyloidosis. Different proteins are implicated in different types of amyloids. Treatment is now available for most types of amyloidosis, but accurate diagnosis and ‘aggressive’ intervention are vital.

Autoinflammatory syndromes

Periodic fever syndromes are recurring episodes of fever and inflammation (which can be painful) affecting the abdomen, chest, joints, skin and/or eyes.

The inherited diseases below usually present in childhood as does another disease of uncertain cause called PFAPA syndrome. Some of these diseases can also present in adults, while Schnitzler’s syndrome seems to affect only older adults.

Despite similarities in their symptoms, they have differing causes, patterns of inheritance, length, and frequency of 'attacks'. Many of these diseases can now be very effectively treated.

Leaflets and resources

Information for amyloidosis patients

FDA Approval

Information for patients with cardiac ATTR amyloidosis

Patient information for Amyloidosis Study with Hospital Episodes Statistics (HES) data

Local amyloidosis support groups

Travel insurance

A website with comprehensive information for patients

• Myeloma.org.uk