The NICE Process

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What is NICE?

The National Institute for Health and Care Excellence (NICE) is an executive non-departmental public body of the Department of Health and Social Care in England.  It serves both the English and the Welsh NHS.

One of the roles of NICE is to appraise the effectiveness of new drugs, and to decide whether the NHS in England and Wales will pay for patients to receive these new drugs.

To learn more about NICE, visit their website:

To read the NICE outline of the process, visit: NICE Technology Appraisal Processes Guide 

To read the NICE Health Technology Assessment guidelines visit: NICE HTA Guidance

To read the NICE Highly Specialised Technologies guidance visit: NICE HST Guidance

How do we access new medicines?

The journey from research, to discovering an effective treatment for a condition, to getting the drug on patient’s bathroom shelf is a long and complex process.

There are many factors to consider, including how to make best use of the NHS’s very limited financial resources.  The process needs to decide whether the money will be well spent on the treatment, or if it could have a greater impact if it was spent elsewhere.

For an in-depth but easy-to-read explanation of the process, visit

This process, as outlined in the infographic, has to be followed every time a new drug and treatment for FOP needs to be approved for use on the NHS. 

FOP friends logo

How can I help ?

Patient organisations have an invaluable role to play in the HTA/HST NICE processes.  At FOP Friends we have been working tirelessly behind the scenes for many months, participating in webinars and meetings as well as liaising with a number of different agencies, to ensure that the voice of our community is heard in these vital decision-making processes.

When deciding whether to pay the (often) high prices for these new drugs and treatments, the NHS needs to know that it will have a real impact on those living with the condition.  This is where we need your help!

We need to understand the true impact of living with FOP

When it is considering the request to approve a drug, NICE needs to fully understand the impact living with a condition such as FOP has on a person’s life.  This is sometimes known as the ‘impact/burden of illness’.  At FOP Friends, we have been working hard to build a strong case for the need for an effective treatment for FOP.

As part of this, we have created a survey for patients, parents and carers to capture the real challenges of living with FOP.  Any information given in this survey will be anonymised and you will not be contacted about your responses.  The more responses to the survey we receive, the better picture we can present to those who are making the decision.  They need to understand the harsh reality of FOP.

We have all been waiting so long for a treatment for FOP, and now we have the opportunity to make it happen.  But we can only do it with your help.

If you have any questions about any surveys you are sent, please do get in touch: Contact Us

Want to learn more?

Beacon have created a number of excellent webinars for people who are interested in learning more about the Heath Technology Assessment (HTA) process.  Visit their YouTube channel or website to learn more.

Rare Beacon YouTube

Rare Beacon Website