PNH Support

Registered Charity Number 1161518

Total raised
£108.88 + £5.00 Gift Aid = £113.88
+ £0.00 Gift Aid
+ £5.00 Gift Aid

About PNH Support

PNH Support is a Charitable Incorporated Organisation (CIO) registered with the Charities Commission (number 1161518). The organisation was started in 2015 by patients living with paroxysmal nocturnal haemoglobinuria (PNH) who realised there was a need for an independent, patient led, legal platform through which we could engage with the many stakeholders in our world.

PNH is an ultra rare disease and it is very easy for someone living with PNH to never meet another person in the same situation. PNH Support values peer-to-peer support and considers it to be an essential and valuable way for people living with PNH (and their families) to share their experiences, support one another and reduce isolation.

Our organisation comprises three volunteer trustees as well as our members made up of patients and family members. We arrange regional patient support meetings, produce a 6 monthly newsletter, hold a biennial patient and family conference, moderate a closed Facebook page and advocate on behalf of the PNH patient community in England and Wales.

Get fundraising!

If you'd like to run, swim, bake (or do anything else to raise some money), click the button below to get started. It's quick and easy to register and by doing so here at, you can be sure that every penny raised will reach PNH Support.

Main partner

The Co-operative Bank are proud to be the main sponsorship partner of the Wonderful Organisation supporting charities to make a difference by ensuring 100% of donations go directly to doing good. Learn more about the Bank’s values and ethics.

Corporate sponsors

Our Sponsors support the platform in kind by providing access to commercial and professional services on a pro-bono basis; through staff secondment and access to volunteers; or by making financial contributions to cover our operating costs.

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What makes us wonderful?

We recognise the selfless commitment made by fundraisers who train for months to run marathons, face their fears by jumping out of aeroplanes or open their homes to the community for charity bakes and coffee mornings. We believe the charities they support should receive EVERY PENNY from their fundraising efforts.

We also believe that Gift Aid (a scheme enabling charities to reclaim tax on donations made by UK taxpayers) should be directed IN FULL to the charities. This is why the Wonderful Organisation does not generate profit (or even cover costs) by deducting money from fundraisers' sponsors or Gift Aid contributions.

We are a non-profit organisation funded entirely by like-minded, philanthropic businesses. That's what makes us wonderful!

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