What is the Better Together Project?

An alliance of six small charities supporting those living with bone marrow related health conditions (including PNH Support) secured funding in September 2022 from The National Lottery Community Fund to build an ambitious three year project.

This project is called “Better Together for Healthy Bone Marrow”. It will support our communities and strengthen our organisations.

During the project, our organisations will work together to deliver improved support for our communities – people affected by a range of related rare bone marrow failures that are not caused by cancer.

The six small charities in this partnership are:

• The Aplastic Anaemia Trust
• CAN (Congenital Anaemia Network)
• DC Action
• Fanconi Hope
• PNH Support

What will this project achieve?

Because of Better Together for Healthy Bone Marrow, people affected by these rare bone marrow failures will be better informed, less isolated and more connected, and more resilient.

This is a three-year project with a long-term impact. Each of our charities will become stronger and more resilient, better placed to work with and for their communities into the future.

Alex Naylor, Trustee of PNH Support: 

PNH Support is delighted to announce the launch of this new three year project and partnership funding from the National Lottery Community Fund. Working with The Aplastic Anaemia Trust and the other members of the Better Together for Healthy Bone Marrow Alliance we will be able to deliver improved mental health services to our community and increase awareness and support for those living with or affected by ultra-rare blood conditions. 

This project brings with it an opportunity to share the extensive knowledge and experiences of the seven small but mighty charities that make up the Better Together for Healthy Bone Marrow Alliance. The project will also allow us to improve our offering and information for not only the PNH community but also across the wider patient community living with bone marrow failures.” 

What does this mean for people affected by PNH

This project will respond to the challenges faced by people with rare bone marrow conditions by: 

  • Delivering mental health and wellbeing support to people in our community – working safely and effectively within a Clinical Governance and Excellence Framework – see here for more information
  • Bringing people together through events and people-led projects
  • Providing better information, advice and support

The means people affected by PNH can look forward to new and improved support services and information from us too. 

How can I get involved?

The project will provide brand new opportunities for you to engage with us, and with the other alliance charities. Sign up as a member here if you haven’t already to receive our email updates to hear about these opportunities or contact us on contact@pnhuk.org.

Better Together Community Reference Group (CRG)

The Better Together Project has a Community Reference Group comprising patients and carers from all 6 charities. This group will meet every 2 months and co-develop new information resources and co-develop the criteria and process for the “Test and Learn” pilot projects that are built into the funding.

The Community Reference Group provides an opportunity for partner charities to recruit, develop and train volunteers, in this way growing their capacity. The Community Reference Group will take part in monthly meetings and six-monthly review and planning meetings, which will be convened and led by the Better Together Project Manager. There will be some time required to undertake pre-reading or preparation ahead of meetings.

We currently have an opportunity for a patient to join the CRG. To find out more please email contact@pnhuk.org.

With thanks to…

This project is funded by The National Lottery Community Fund – thanks to players of The National Lottery.