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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 |
NP-11697
Date of preparation: June 2020
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 |
NP-11697
Date of preparation: June 2020