AGSD-UK receives grants from pharmaceutical and other allied health companies to promote and support the work it does on behalf of the UK GSD community. The relationship is based on independence, accountability and transparency.
The Pharmaceutical industry is closely governed by the strict guidelines of the Association of the British Pharmaceutical Industry (ABPI).
As an organisation supporting an ultra-rare disease with high needs, our membership fee is low and waived for some. It is not uncommon for organisations such as us to take a pragmatic view of accepting an appropriate level of industry funding. Currently we receive industry funding for our Specialist Care Advisor and our Annual Conference. Trustees closely monitor and ensure that these companies neither seek nor receive any influence over the charity in any way.
Beyond financial resourcing, co-production between industry and patients is actively encouraged. AGSD-UK seeks to empower and promote patient voices. As the only organisation representing all people with a GSD in the UK we are uniquely placed to enable safe and ethical partnership working between patients and professionals and advocacy is at the heart of everything we do.