Coronavirus (COVID-19)

What you need to do

What the Petitions Committee is doing

Petition Fund Kuvan (sapropterin) on the NHS for people with PKU

The drug Kuvan allows people with the rare condition PKU to manage their condition. The treatment has been licensed for 11 years but has never been commissioned by the NHS.
The government should make funding available for this treatment for all PKU patients that could benefit.

More details

PKU is a rare condition, diagnosed at birth. People with PKU cannot process protein through their body properly and without careful management an amino acid (phenylalanine) causes brain damage. The only treatment funded by the NHS is a restricted diet containing virtually no natural protein. The PKU diet is stressful and difficult to cope with. Outcomes are variable.
Kuvan (sapropterin) is a life changing treatment available in almost every country in Europe. It needs to be available here.

Sign this petition

17,701 signatures

Show on a map

100,000

Government will respond

Government responds to all petitions that get more than 10,000 signatures

Waiting for 30 days for a government response

At 100,000 signatures...

At 100,000 signatures, this petition will be considered for debate in Parliament

Share this petition