Community Advisory Board

What is the Community Advisory Board (CAB)?

Multiple hands stacked on top of each other, symbolizing unity and teamwork, with various skin tones and accessories, including rings and a scrunchie.

PKDIA represents the pyruvate kinase deficiency community.  To be able to do this, we need to hear the voice of community members across the age spectrum and from both people with PKD and their carers.

The CAB will be a forum for discussion, creating ideas of what PKDIA will do and then supporting the work to deliver these aims. 

The CAB will meet remotely, which means people can join from across the globe, to help make us an even stronger international community.

 How the CAB will work:

PKDIA respects that CAB members are giving their time for free.  Therefore, PKDIA wishes to reduce the burden on its members. 

We would like CAB members to join us to:

  • Build ideas for campaigns, research and projects.

  • Build resources to share with our community

  • Devise plans for webinars with our community to help increase education about PKD

 CAB Member requirements:

·        Experience of living with PK Deficiency or being a carer of someone living with PK Deficiency.

·        Willing to participate in online meetings, email conversations and work together to design resources.

CAB members will:

  • Receive preferential access to support for travel and lodging for face-to-face conferences sponsored by PKDIA.

  • The opportunity to influence the work of PKDIA

  • Learn new skills that can support your career or personal development 

To apply to become a Community Advisory Board Members please complete the form below.

Please out Community Advisory Board in the subject box and let us know your link to Pyruvate Kinase Deficiency and whay you want to become a CAB member. We’d also like to hear what you will bring to the role.

Many thanks…