Archives: FAQs

What is the National Amyloidosis Centre (NAC)?

The NAC is a highly specialised NHS clinical service funded by NHS England to provide a specialist clinical service for amyloidosis patients throughout the UK.  It is the only specialist amyloidosis centre in the country and has been… Read More

How do I arrange an evaluation at the NAC?

Patients in the UK require a physician’s referral to the NAC.  Information for referring physicians is available here. For questions regarding appointments contact: Mr Ramon Lamarca Tel:  020 7433 2813 r.lamarca@ucl.ac.uk Overseas patients The Royal Free Hospital and… Read More

What should I expect at the NAC clinical evaluation?

The NAC clinical evaluation usually takes 1 -2 days, and hospital or hotel overnight accommodation can be arranged when necessary.  It is recommended that you bring a family member or friend with you if possible.  There is a… Read More

Where is the NAC?

The NAC is part of the University College London (UCL) Division of Medicine and is situated at the Royal Free Hospital in Hampstead, London. Directions are available here.

Am I eligible to participate in a clinical trial?

There are several ongoing trials taking place at the NAC.  See here for more information.  If you are interested in participating in a trial, ask your doctor whether you are eligible when you attend your appointment at the… Read More

How long are waiting times for NAC appointments?

The waiting time for an NAC appointment is an average of 2/3 weeks from when the referral letter is received at the NAC, not from the date on the referral letter.

How can I support amyloidosis research at the NAC?

For information on donations and fundraising for the UCL Amyloidosis Research Fund, see here.

When do hereditary ATTR amyloidosis symptoms appear?

Symptoms of hereditary ATTR amyloidosis may appear as early as age 20, or as late as age 80.  Age of onset is usually quite consistent within families. The TTR gene mutation that most commonly causes hereditary ATTR amyloidosis… Read More

How common is hereditary ATTR amyloidosis?

Hereditary ATTR amyloidosis is a very rare disease. The most common type, associated with the Val30Met mutation, is thought to affect about 10,000 people in the whole world.  It has hitherto clearly been by far the most commonly recognised form of… Read More

Who gets hereditary ATTR amyloidosis?

Hereditary ATTR amyloidosis runs in families.  It may be inherited either from the patient’s mother or from the patient’s father.  People with hereditary ATTR amyloidosis are born with a mutation (alteration) in the TTR gene that causes the… Read More