What is 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 who recognised the need for an independent, patient led, legal platform through which we could engage with the many stakeholders in our world. These include the NHS, the PNH National Service, homecare providers, pharmaceutical companies developing new treatments, the National Institute for Health and Social Care Excellence (NICE) and other patient organisations both locally and internationally.

As a result of PNH being an ultra rare disease, it is common for a person 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. We wanted to create a community that could engage with each other and our stakeholders because together we are stronger!

We hope this website provides a place that those who have been living with PNH for some time, as well as the newly diagnosed, can find reliable and relevant information.

Our organisation comprises of three volunteer trustees as well as our members.

Please see our Membership page for more information.

PNH Support’s Objects

Our formal objects, as stated in the Constitution are as follows:

• To promote, protect and preserve the physical and mental health of those diagnosed with Paroxysmal Nocturnal Haemoglobinuria (“PNH”) who reside in England, Wales and Northern Ireland (either permanently or temporarily) through the provision of support, education, advocacy and practical advice;

• To advance the education of patients with PNH who reside in England, Wales and Northern Ireland in particular but not exclusively by the provision of advice and a point of contact for newly diagnosed PNH patients in England, Wales and Northern Ireland.

Constitution

PNH Support is governed by a Constitution which is based on a template provided by the Charities Commission.

Click to view our Constitution Page or Download here

Our medical advisor

PNH Support has a medical advisor who has reviewed the medical information provided on our website which does not replace medical advice for which we encourage you to consult your doctor.

Dr Austin Kulasekararaj

Consultant Haematologist
PNH National Service

Kings College Hospitals NHS Foundation Trust
Department of Haematology
Hembleden Wing
Denmark Hill
London
SE5 9RS
Direct Telephone Line: 020 3299 1039
Email: kch-tr.pnh@nhs.net

Funding

Although we are a charity manned by volunteers, we require funds to run and maintain the charity, cover trustees’ expenses, hold patient meetings and educational conferences, attend international conferences and support members’ with travel and accomodation expenses where required.

PNH Support has prevously received grant funding Alexion Pharmaceuticals Inc, Ra Pharmaceuticals Inc and Apellis Pharmaceuticals.

Gift Aid

PNH Support is registered for Gift Aid in case those eligible 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 sponsors 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.

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.

 Contact Us:

  Email: contact@pnhuk.org