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Shire Patient Organisation Support 2020

Shire UK support provided to Patient Organisations during 2020

Patient Organisation  Amount of Funding  Involvement Description of Services
Above and Beyond - Bristol City Centre Hospitals Charity  £ 1,000.00 Financial Support  Sponsorship of Inherited Cardiovascular Conditions Conference
ADDISS £ 11,000.00 Financial Support  ADHD SoS Service Project
Adult ADHD NI (ADD-NI) £ 5,000.00 Financial Support  Emergency COVID funding
Age UK £ 10,000.00 Financial Support  Emergency COVID funding
Eu Gaucher Disease Network € 70,000.00 Financial Support  The European Gaucher Disease Scientific Meeting 2020 
Fabry International Network £ 600.00 Contracted services  Registration for FIN 2019 Expert Meeting
Fabry International Network £ 120.00 Contracted services  Honorarium for Contracted Services
Fabry International Network $ 38.65 Contracted services  Expenses for Contracted Services
FareShare £ 10,000.00 Financial Support  Emergency COVID funding
Genetic Alliance UK £ 5,000.00 Financial Support  Emergency COVID funding
Genetic Alliance UK £ 5,000.00 Financial Support  Rare Disease Day 2020 Campaign
Genetic Alliance UK £ 6,000.00 Financial Support  Resetting the Model Phase 2 Project
Genetic Alliance UK £ 12,000.00 Financial Support  Rare disease UK industry membership renewal
HAE UK £ 3,020.00 Financial Support  Emergency COVID funding
HAE UK £ 10,000.00 Financial Support  Core Activities 
Hypopara UK £ 1,285.00 Contracted services  Honorarium for Contracted Services
Hypopara UK £ 322.47 Contracted services  Travel expense reimbursement in relation to participation in a Takeda organised Patient Organisation workshop in August 2019
International Gaucher Alliance £ 45,000.00 Financial Support  International Gaucher Alliance 2020 work programme
IPOPI: International Patient Organization for Primary Immunodeficiency € 250,000.00 Financial Support  Core Activities 
IPOPI: International Patient Organization for Primary Immunodeficiency £ 650.00 Contracted services  Honorarium for Contracted Services
Metabolic Support UK £ 10,000.00 Financial Support  Emergency COVID funding
Over the Wall £ 20,000.00 Financial Support  Camp on the Cloud project
PID UK £ 10,000.00 Financial Support  Core Activities 
PINNT £ 5,000.00 Financial Support  Core Activities 
PINNT £ 4,700.00 Financial Support  HAN week
The British Society of Echocardiography £ 3,600.00 Financial Support  Meeting sponsorship
The Childhood Trust £ 300.00 Financial Support  Volunteer Project
The Childhood Trust £ 10,000.00 Financial Support  Emergency COVID funding
The Gauchers Association Ltd £ 10,000.00 Financial Support  Emergency COVID funding
The Gauchers Association Ltd £ 19,350.00 Financial Support  Patient and Family Support Services
The Haemophilia Society £ 5,000.00 Financial Support  Talking Red project
The Haemophilia Society £ 130.00 Contracted services  Honorarium for Contracted Services
The Haemophilia Society £ 15,000.00 Financial Support  Talking Red Event
The MPS Society £ 250.00 Contracted services  Honorarium for Contracted Services
The MPS Society £ 400.00 Contracted services  Honorarium for Contracted Services
The MPS Society € 103.76 Contracted services  Expenses for Contracted Services
The MPS Society £ 811.00 Contracted services  Expenses for Contracted Services
The MPS Society £ 8,550.00 Financial Support  FIND - MPS UK Collaboration project
The MPS Society £ 5,000.00 Financial Support  Core Activites
The MPS Society £ 45,000.00 Financial Support  Reaching Families in Need programme
The MPS Society £ 5,500.00 Financial Support  Emergency COVID funding
The MPS Society £ 16,250.00 Financial Support  Development of patient information materials 
The Police Community Clubs of Great Britain £ 1,000.00 Financial Support  Core Activities 
UK PIPS £ 10,000.00 Financial Support  Emergency COVID funding
UK PIPS £ 7,584.00 Financial Support  Core Activities 


Shire Ireland’s support provided to Patient Organisations during 2020

Patient Organisation  Amount of Funding  Involvement Description of Services
Irish Platform for Patient Organisations, Science and Industry (IPPOSI) € 8,500.00 Contracted services  IPPOSI Membership Fees 2020
Irish Platform for Patient Organisations, Science and Industry (IPPOSI) € 3,000.00 Financial Support  2020 IPPOSI Conference – Patient Involvement in the Irish Health System
Rare Diseases Ireland € 3,500.00 Financial Support  2020 Membership Fee 
The Saoirse Foundation £ 7,500.00 Financial Support  Donation to The Saorise Foundation in relation to support of the BUMBLEance, Children's National Ambulance Service
Irish Haemophilia Society € 390.00 Contracted services  Contracted Services
Irish Haemophilia Society € 552.50 Contracted services  Contracted Services

 

EXA/UK/CORP/0049
Date of preparation: July 2021