How The Haemophilia Society is funded
The Haemophilia Society receives funding from a range of organisations and members of our community. Like many charities working in the healthcare sector, including haemophilia societies across the UK and Europe, some of that funding comes from pharmaceutical companies. This funding helps support projects such as the Newly Diagnosed Weekends, Youth Camp, Talking Red, and Youth Ambassador projects.
Without this funding, it would be impossible for us to run many of these programmes which you tell us offer essential support to our members. We understand that many people within our community are concerned by any link to pharmaceutical companies which is why it is very important to The Haemophilia Society that our sources of funding are clear.
There are strict guidelines relating to donations from pharmaceutical companies to health organisations. Companies must respect the independence of the project and organisation to which they have donated and are not allowed to influence any of its written material.
The Society decides which projects it wants to deliver, based on feedback from members and then approaches companies that we feel are best placed to offer financial support. Often, more than one company will fund a project. At all times The Society maintains its independence. The funding company cannot dictate how a project is run or have any input in its content or outcome.
As per clause 27 of the 2019 ABPI code, all pharmaceutical companies must declare their sponsorship of “patient organisations”, which is how The Haemophilia Society is classed under the code. It must be made clear which company is supporting each programme. The details of funding by individual project can be found on the individual company websites as per clause 27.7. This must be published once year, although some companies produce this information twice a year.
Individual trustees of The Society may also receive funding from pharmaceutical companies, for example to attend an event or conference or in the form of a research grant. These payments are declared at the start of every board meeting. The Society may receive funding for staff to attend relevant conferences and events, both in the UK and beyond, where it can be shown that The Society and its members will derive demonstrable benefit from the knowledge gained.
It should be pointed out that some of our work may be indirectly funded by pharmaceutical companies, particularly in connection with projects linked to the European Haemophilia Consortium and the World Federation of Hemophilia.
The Society is also funded using money from legacies and community fundraising. A breakdown of how we are funded can be found in our Annual Reports, which are published every year.
The Haemophilia Society currently receives no government funding. The Archer Report into Contaminated Blood and Blood Products in 2009 included a recommendation that the Government should ‘secure the future of the UK Haemophilia Society by adequate funding’. As a result, the Department of Health provided a grant of £100,000 per year for five years finishing in 2013/14 to help us provide services to our members. This funding did not continue.
The Haemophilia Society relies on the funding sources outlined to continue the unique support network that this charity offers to people affected by haemophilia and other bleeding disorders from birth to end of life. We are very grateful for your support and to all those organisations whose donations allow us to carry out our life-enhancing work.
Who funds our projects?
The Haemophilia Society is very proud of the range of services which we are able to offer to our members at all stages of their lives. Below are The Society’s major projects for 2019/20 with details of their main funding sources.
Talking Red, funded by Takeda
Newly Diagnosed Family Weekends funded by Pfizer, Shire, Spark, Roche/ Chugai, BioMarin
Youth Ambassadors and Youth Camp, funded by Sobi
Newly Diagnosed weekends funded by Pfizer, Spark and Roche/ Chugai, BioMarin
Core funding by CSL Behring
Advocacy work funded by Sobi
Member Conference funded by Spark, Pfizer, UniQure, Roche/Chugai, BioMarin