Although we are manned by volunteers, we require funds to run and maintain our organisation, cover operating expenses such as insurance, website fees, trustees’ expenses, support 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.
Gift Aid
PNH Support is registered for Gift Aid for those who would like to utilise this to enhance their donation. If you are a UK taxpayer and confirm you are happy for Gift Aid to be applied to your donation, PNH Support can claim an additional 25p for every £1 you donate. 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.
Easyfundraising
Raise funds for PNH Support through Easyfundraising without paying anything yourself. Easyfundraising partners with over 8,000 brands who will donate part of what you spend to a cause of your choice (just elect PNH Support). It won’t cost you any extra. The cost is covered by the brand.
Paypal
If you use Paypal, you are able to make a donation to PNH Support using their donation option
JustGiving
If you wish to raise money for PNH Support through an activity where others sponsor you or you sponsor someone e.g. running a marathon or dancing non-stop for 24 hours you can link to our JustGiving account. Contact us on contact@pnhuk.org if you would like us to arrange a sticker of our logo or a branded t-shirt for you to wear.
People’s Fundraising
You can donate to PNH Support using People’s Fundraising.
Donations
If you would like to make a donation, please click the button below. You will be directed to an external website (People’s Fundraising). If you would prefer to make a donation directly to our bank account so we get all of the donation without commission being taken, please email us at contact@pnhuk.org so we can send you our bank account details.