Patient Organisation Payments 2021

UK

Name of patient organisation	Description of Support	Amount
AKU Society	Grant - Translation of patient materials	£7,420.15
AKU Society	Provide support, development and implementation of AKU registry to allow AKU patients and treatments data collection in EU	EUR 5,000.00
AKU Society	PO was sonsulted as speaker as an expert of AKU front of the French Health Authority	EUR 680.00
Brain Tumour Research	Q2 Donation	£250.00
Genetic Alliance UK	Donation for Genetic Alliance Rare Disease Day 28.02.2021	£2500.00
Haemophilia Scotland	Sponsorship - Membership fees 2020	£10,000.00
International Patient Organisation for Primary Immunodeficiencies (IPOPI)	Sponsorship - IPOPI Asian Regional Virtual Workshop - payment 1	£10,000.00
International Patient Organisation for Primary Immunodeficiencies (IPOPI)	Sponsorship - IPOPI Asian Regional Virtual Workshop - payment 2	£10,000.00
PNH Support	Engagement of Maria Piggin & Alex Naylor in the PNH Ethnographic research	£1,120.87
The Aplastic Anaemia Trust	Medical Grant - Winter Wellness Program	£10,000.00
The Haemophilia Society	Refund of Support for 2020 WHF Conference	-£12,500.00
The Haemophilia Society	Sponsorship - Translation of booklets into Welsh	£2,588.00
The Haemophilia Society	Support of Centre Engagement Program	£5,000.00
The Haemophilia Society	Support of Local Group Project	£20,000.00
The Haemophilia Society	Sponsorship - CRM	£20,000.00
The ITP Support Association	Sponsorship - ITP Roundtable Project	£5,000.00
The Platelet Mission - ITP Support Association	Payment for Mervyn Morgan's participation in patient meeting on May 12th, 2021	£273.00
UK ATTR Amyloidosis Patients Association (UKATPA)	Sponsorship - Support the Association development of Website	£5,000.00
UK ATTR Amyloidosis Patients Association (UKATPA)	Speaking engagement for Amyloidosis Congress	£666.65
UK ATTR Amyloidosis Patients Association (UKATPA)	Education and inform Sobi employees about challenges of living with hATTR	£100.00

IRELAND

Name of patient organisation	Description of Support	Amount
IPPOSI	Grant - 2021 Membership	EUR 8,500.00
Irish Haemophilia Society	Sponsorship for Platinum annual	EUR 15,000.00
Irish Haemophilia Society	Sponsorship for Physiotherapist and Dietitian Evening Training	EUR 14,000.00