PTENUKI Cost of living grant appeal now open!

The PTEN UK and Ireland Patient Group are proud to announce the launch of our Cost of Living Grant. This grant aims to help support families in the UK and Ireland who need a bit of extra help during these difficult times. We are hoping this grant will help ease the burden of the challenges that having a rare disease brings. This could be in the form of helping with the added financial burden of attending multiple medical appointments, helping to pay for essential equipment needed around the home, or helping with your mental health by paying for a day trip out for you and your family.

This grant is open to everyone that has a PTEN gene mutation and their families. There are 6 categories in which you can apply (see below). Due to the limited funds available, there are 20 grants up for grabs with a maximum award of £200 to be granted. The closing date for entries is the 26th February 2024, with our aim of issuing the grants on 29th February, Rare Disease Day 2024.

If you would like to apply then please read our categories and T&Cs below and fill in the Google form at the bottom of the page. All successful applicants will be contacted via phone/email on the 29th February 2024. If you have any questions about the grant scheme please contact Kelly on Thank you.

Please apply for the Covid Kindness Grant under one of the following categories:

  • PTEN related costs – costs of attending multiple hospital appointments for example

  • Education – money towards a training course or a Talk Tools assessment for example

  • Equipment – e.g. iPads, OT, SLT, PT equipment for the home

  • Mental health and wellbeing – e.g. days out  / tickets for the whole family

  • Essentials – e.g. items for the home such as washing machines, internet connection, help towards your electric bill etc

  • Other – anything else that doesn’t fit into the above categories will be considered

If you would like to apply then please click HERE

Terms and conditions of the grant:

  • Grants are to benefit our community and will only be given to people with a PTEN gene mutation and their families.
  • The closing date of applications is the 26th February 2024.
  • Successful applicants will be contacted via email / phone on the 29th February 2024.
  • The charity aims to make grant payments by the 15th March 2024, but this can not be guaranteed.
  • The maximum grant that will be awarded is £200. Items over £200 can be purchased and the grant money can be a part payment towards the item.
  • If the grant money is to be awarded to the applicant, funds will only be released once proof of purchase (i.e. a receipt) has been sent to the charity.
  • So the award can be allocated, individual bank details will be collected on successful application of the grant.
  • This grant scheme is only open to UK and Ireland residents. 
  • With permission from the recipient, the charity would like to be able to write a blog and social media posts about the grant.

If you have any questions about the grant scheme please contact Kelly on Thank you.