Join our Project Advisory Group

27 January 2020

Join our Project Advisory Group to help us improve mental health services for children with rare genetic developmental conditions.

Join our Project Advisory Group to help us improve mental health services for children with rare genetic developmental conditions.

Background of the Knowledge Transfer Partnership

We are entering the second year of our Knowledge Transfer Partnership with Cardiff University which aims to improve mental health services and information available for children with rare genetic conditions which cause developmental and intellectual delay.

Research has shown that children diagnosed with these genetic conditions are at higher genetic risk of developing mental health problems however they often do not receive appropriate mental health support.

The team have been speaking to parents, clinicians and several individuals who work with charities that support children and their families. From these conversations, we have learnt about the current challenges families and service providers experience when trying to access and provide mental health support. We would now like to form a project advisory group to help guide the future direction and activities of the project and devise strategies that we can trial to help tackle these challenges.

Who can join the Project Advisory Group?

We would like the group to include:

  • parents
  • young adults who are over the age of 18 diagnosed with a developmental genetic condition
  • health professionals including psychologists, psychiatrists, genetic counsellors, paediatricians and GPs
  • health commissioners
  • rare disorder charity groups
  • lawyers; and
  • educationalists

How often and where will the group meet?

Once we have confirmed membership, we will arrange for the meetings to take place at the most mutually convenient location for all members of the group. Should you not be able to attend in person, there may be the opportunity to teleconference into the meeting.

The group would meet 2-3 times per year at key stages to discuss the progress of the project and have key input in the direction on the project by making recommendations as to how the research team should proceed to deliver the project aim. The project will run until January 2022.

Is anything offered to members for taking part?

Cardiff University will:

  • Cover reasonable travel expenses for attendance at meetings, in line with Cardiff university guidelines.
  • Offer £15 per hour to members of the public for each group meeting they attend (people can request less if they are in receipt of state benefits).

How do I express my interest?

If you would like to be a member of our advisory group, please email or call Lowri O’Donovan.

Email: [email protected] / [email protected]

Telephone: 02920688406

We hope to hear from you soon!

3 thoughts on “Join our Project Advisory Group”

  1. I would be interested in the project advisory group – depending on where we would meet – am based in Southampton and am mum to a daughter with Dravet Syndrome. I am her full time carer.

    1. Leigh Mulvihill

      Hi Nancy, thank you for your interest in the group. I’ve passed your email address on to Lowri, the project coordinator and she’ll get in touch to give you some more details.

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