Although we are manned by volunteers, we require funds to run and maintain our organisation, cover trustees’ expenses, hold patient meetings and conferences, attend international conferences to be able to share knowledge, and support members.
PNH Support has previously received grant funding from Alexion Pharmaceuticals Inc, Ra Pharmaceuticals Inc and Apellis Pharmaceuticals.
Some trustees provide a patient perspective to companies developing PNH treatments or agencies developing PNH studies under consultancy agreements (as required by industry codes of conduct) which fees are paid to PNH Support. These companies are SOBI, Roche, Bioenical Emas, HCD Economics, Florio, Alexion, ReD Associates and Novartis. PNH Support also receives honoraria for its involvement in National Institute for Health Research (NICE) consultations and review of plain language journal articles.
PNH Support is one of 6 small charities in receipt of a National Lottery Community Fund grant for a 3 year project from September 2022 called “Better Together“.
PNH Support is a collaborator on a National Community Survey project which surveyed 7 rare disease communities. Alexion AstraZeneca Rare Diseases, Swedish Orphan Biovitrum, Roche and Pfizer contributed to funding this project. The report of this survey called ‘Rare Voices” can be found here
Gift Aid
PNH Support is registered for Gift Aid for those who would like to utilise this to enhance their donation. A Gift Aid form can be found here
Fundraising and Sponsorship
Does your place of work sponsor charities on a regular basis or do you know of any companies that sponsor charities? Would you like to fundraise for us? If so please contact us on contact@pnhuk.org.
Give as You Live
You can also raise money for us by shopping on the internet through Give as You Live
All you need to do is log on to their website and choose PNH Support and then carry on with your internet shopping and we will receive a commission.
Paypal
If you use Paypal, you are able to make a donation to PNH Support using their donation option
Donations
If you would like to make a donation, please click the button below. You will be directed to an external website which we have chosen because it does not take a commission from your donation