Patient Organisation Payments 2019

UK

Name of patient organisation	Description of Support	Amount
Findacure	Sponsorship - Findacure Conference	£5,000.00
Findacure	Grant - Peer Mentoring Program	£5,000.00
Genetic Alliance UK Ltd	Grant - 2018 and preparation for RDD 2019	£8,000.00
Genetic Alliance UK Ltd	Grant - Industrial Members	£11,000.00
Metabolic Support UK	Support - Next Generation Project	£5,000.00
Metabolic Support UK	Grant - Qualitative Research Study	£2,500.00
Cambridge Rare Disease Network	Sponsorship - Summit 19	£10,000.00
The Haemophilia Society	Educational Support	£10,905.68
The Haemophilia Society	Grant - APPG Project	£34,000.00
The Haemophilia Society	Grant - Desk Based Research	£6,000.00
The Haemophilia Society	Sponsorship - WHD	£77.90
The Haemophilia Society	Grant - Youth Ambassadors Program	£60,000.00
The Haemophilia Society	Educational Support	£250.00
The Haemophilia Society	Donation for WHD	£54.00
The Haemophilia Society	Grant - Haemophilia Development	£6,000.00
The Haemophilia Society	Educational Support	£250.00
The Haemophilia Society	Grant - Attendance cost to WFH	£12,500.00
Histiocytosis UK	Sponsorship - UK Forum	£2,000.00
Haemophilia Northern Ireland	Sponsorship - Patient Meeting	£1,227.25
Haemophilia Scotland	Sponsorship - Patient Pairing Project	£10,404.05
Metabolic Support UK	Sponsorship - Attendance BMIDG	£70.00
AKU Society	Grant - Passport Medical Booklets	£1,200.00
The Specialised Healthcare Alliance	Sponsorship - Membership 2020	£14,500.00

 

IRELAND

Name of patient organisation	Description of Support	Amount
Irish Haemophilia Society Ltd	Donation	EUR 990.00
Irish Haemophilia Society Ltd	Sponsorship - Program 2019	EUR 15,000.00
Irish Haemophilia Society Ltd	Sponsorship - Third Level College Educational Grant	EUR 42,000.00
Irish Haemophilia Society Ltd	Sponsorship - I.H.S Corporate Giving Program 2019 Sponsorship - Delegates to attend AGM	EUR 16,000.00
Irish Haemophilia Society Ltd	Grant - Funding of Patient Accommodation	EUR 50,000.00