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Content :

Sponsorship 2017

Allergy UK

Type of support:          Contracted Services/Fees for Service
Funding:
£1,200           Direct Financial Support 

For Allergy UK to chair the Atopic Dermatitis (AD) Steering Group Meeting in March 2017.

Association for Glycogen Storage Disease (UK)

Type of support:          Core/General Funding
Funding:
£40,000         Direct Financial Support 

Support for the (AGSD-UK) Pompe Advocacy Worker known as the Specialist Care Advisor-Pompe Disease.

Type of support:          Project Funding
Funding:
£19,755         Direct Financial Support 

Collaboration between AGSD-UK, RCGP & medical teams working at the 8 NHS Highly Specialised Services for Lysosomal Storage Diseases (3 paediatric & 5 Adult) in England.

Type of support:          Project Funding
Funding:
£2,500           Direct Financial Support 

Financial support for PST team meetings.

Type of support:          Project Funding
Funding:
£1,000           Direct Financial Support 

To support the AGSD-UK to meet with the clinical teams at NHS Highly Specialised Centres in the UK.

Type of support:          Core/General Funding
Funding:
£10,000         Direct Financial Support 

Support the AGSD-UK with venue hire for their annual conference.

Asthma UK

Type of support:          Core/General Funding

Funding:£12,000Direct Financial Support 

Gold Corporate Partnership of Asthma UK.

British Paediatric Surveillance Unit

Type of support:          Project Funding

Funding:£2,999 Direct Financial Support 

Sponsorship package for rare diseases in Paediatrics Conference 2017. Bench to Bedside: new Treatments for children with rare diseases 27/03/17 at Birmingham Children's Hospital.

British Thyroid Foundation

Type of support:          Project Funding

Funding:£500 Direct Financial Support 

Financial contribution towards the graphic design of a Thyroid Cancer Booklet for patients.

Cambridge Rare Disease Network

Type of support:          Project Funding

Funding:£3,000Direct Financial Support 

Sponsor independently run 1 day educational event, bringing together Patient Groups, Healthcare, Academics, Researchers, Biotech Companies & Pharmaceutical Industry as a bronze sponsor.

Diabetes UK

Type of support:          Core/General Funding

Funding:£3,581Direct Financial Support 

Sponsorship of an annual event that is organised by YDEF Wales for SpRs based in Wales.

Type of support:          Core/General Funding

Funding:£264Direct Financial Support 

Sponsorship of an annual event that is organised by YDEF Wales for SpRs based in Wales.

Type of support:          Project Funding

Funding:£60,000Direct Financial Support 

To provide direct financial support towards the Diabetes UK Inpatient Care Improvement Acceleration project.

Type of support:          Core/General Funding

Funding:  £480Direct Financial Support 

Sponsorship for an event organised by Diabetes UK for Commissioners & HCP’s interested in Diabetes.

Type of support:          Core/General Funding

Funding:  £24,000Direct Financial Support 

The annual YDEF day on the 7th March 2017 in Manchester.

Type of support:          Core/General Funding

Funding:  £75,576Direct Financial Support 

Contribution towards the costs of running & organising the Professional Conference on the 8th – 10th March 2017.

Type of support:          Core/General Funding

Funding:  £70,200Direct Financial Support 

Platinum sponsorship of the Annual Diabetes UK Professional Conference.

Type of support:          Core/General Funding

Funding:  £5,256Direct Financial Support 

Sponsorship of an event that is organised by YDEF Northern Ireland for SpRs based in NI.

Type of support:          Core/General Funding

Funding:  £720Direct Financial Support 

Sponsorship as an exhibitor only at a 1 day Diabetes educational meeting for HCP’s in NI on 7th June 2017.

Type of support:           Core/General Funding

Funding:  £606        Direct Financial Support 

Sponsorship of a series of 7 Diabetes UK educational meetings for primary care health care professionals in the South West & West Lincolnshire.

(made up of individual payments of £84, £174, £87, £87 £174)

Type of support:           Core/General Funding

Funding:  £84Direct Financial Support 

Sponsorship as an exhibitor only at a Diabetes UK organised event called the ‘Northamptonshire Diabetes Network Meeting’ on the 21st April 2017.

Type of support:          Core/General Funding

Funding:£84Direct Financial Support 

Sponsorship of the ‘Northampton Diabetes Network Meeting’ taking place on the 8th September 2017.

DiAthlete

Type of support:          Project Funding

Funding:£48,750Direct Financial Support

Global Tour project led by Gavin Griffiths founder of DiAthlete, to help strengthen diabetes communities joined by local medical professionals.

Eczema Outreach Scotland

Type of support:          Project Funding

Funding:£10,000Direct Financial Support 

To provide financial support to Eczema Outreach Scotland to help further their outreach programme and family support service.

Type of support:          Project Funding

Funding:£3,160Direct Financial Support

To provide financial support and delivery of a focus group with adults and children with AD.

Fabry International Network (FIN)

Type of support:          Core/General Funding

Funding:£26,000Direct Financial Support 

Support for core costs for 2016 (paid in 2017).

FH Europe

Type of support:          Core/General Funding

Funding:3,226Direct Financial Support 

Sponsorship of the FH Europe (HQ in the UK) meeting in Hungary.

Findacure Foundation

Type of support:          Core/General Funding

Funding:£1,000Direct Financial Support 

Sponsorship of Findacure organised meeting - Drug Repurposing for rare diseases on the 27th February 2017 at the Royal College of Nursing.

Type of support:           Core/General Funding

Funding:£1,000Direct Financial Support 

Sponsorship of Findacure meeting at Centre for Life in Newcastle.

Gaucher Association

Type of support:          Core/General Funding

Funding:  £5,000DirectFinancial Support 

Sponsorship of Gaucher Association's 25th Anniversary celebration dinner.

Type of support:         Contracted Services/Fees for Services

Funding:  £750Direct Financial Support 

Fee for identifying and briefing x 6 patients for market research project around living with Gaucher Disease Type1.

Type of support:          Project Funding

Funding:  £10,000Direct Financial Support 

Support via a platinum sponsorship package to support the running of a charity bike ride in 2017.

Type of support:          Core/General Funding

Funding:£25,000Direct Financial Support 

Grant to support patient and family support project in 2017 & 2018.

Type of support:         Contracted Services/Fees for Services

Funding:£328Direct Financial Support 

Speaker fee for CEO to speak about the impact of Gaucher Disease to the media.

Type of support:          Core/General Funding

Funding:£1,250Direct Financial Support

Financial contribution to support new families affected by a diagnosis of Gaucher by providing direct access to other families & also to the support team at Gauchers Association.

Type of support:          Core/General Funding

Funding:£10,000Direct Financial Support 

Financial support to run a two day patient centred educational meeting.

Type of support:         Contracted Services/Fees for Services

Funding:£560             Direct Financial Support 

Gauchers Association's CEO to present to Sanofi Genzyme about the impact of the disease on lives of people with Type 1 Gaucher Disease, their symptoms & the opportunity provided by SRT.

Type of support:         Contracted Services/Fees for Services

Funding:£241Direct Financial Support 

Gauchers Association to provide a speaker at Sanofi.

Genetic Alliance

Type of support:          Project Funding

Funding:£10,000         Direct Financial Support 

Support towards the cost of project 'Access to medicines for rare diseases in Wales: Patient perspectives and priorities'.

Type of support:          Core/General Funding

Funding:£10,000Direct Financial Support 

Core funding for the activities of rare disease UK.

Genetic Disorders

Type of support:          Project Funding

Funding:£6,000Direct Financial Support 

Sponsorship of the 3rd annual UK Genetic Disorders Leadership Symposium 10—11th March 2017.

HEART UK

Type of support:          Core/General Funding

Funding:£1,500Direct Financial Support 

A one off donation to HEART UK raised by Sanofi.

Type of support:                Project Funding

Funding:£42,000Direct Financial Support 

To provide direct financial support towards the running of HEART UK’s Familial Hypercholesterolemia (FH) Action Group.

Type of support:          Core/General Funding

Funding:£2,448Direct Financial Support 

Direct financial support to HEART UK for their annual conference.

Type of support:           Core/General Funding

Funding:£28,440Direct Financial Support 

Direct financial support to HEART UK for their annual conference.

Type of support:          Project Funding

Funding:£ 36,000Direct Financial Support 

Financial support as part of a multi-company sponsorship to the HEART UK-FH Group, led by HEART UK raising & policy campaigning on (FH) to Parliament & Government.

Type of support:         Contracted Services/Fees for Services

Funding:£2,400Direct Financial Support 

Speaker for Value of Innovation Meeting in Barcelona on 29th August 2017.

Type of support:         Contracted Services/Fees for Services

Funding:€ 2,410         Indirect Financial Support 

Indirect payment for expenses for speaker for Value of Innovation Meeting in Barcelona on 29th August 2017.

International Niemann Pick Disease Alliance

Type of support:                Core/General Funding

Funding:  £20,682Direct Financial Support 

Grant to support INPDA objectives granted by Genzyme US.

Type of support:                Core/General Funding

Funding:£30,000Direct Financial Support 

Support the development NPD patient advocacy organisations. Support for general core activities of the organisation.

International Niemann Pick Disease Registry

Type of support:          Project Funding

Funding:£89,718Direct Financial Support  

Support for the development and management of the International Niemann-Pick Disease Registry.

MPS Society (Mucpolysaccharide Disease)

Type of support:          Core/General Funding

Funding:£10,000Direct Financial Support  

Funding to support operational activities in 2016.

Type of support:         Core/General Funding

Funding:£2,500          Direct Financial Support  

Grant to support CEO and Advocacy Support Team Manager attendance at WORLD - February 2017.

Type of support:         Core/General Funding

Funding:£15,000Direct Financial Support 

Grant to support advocacy support post in Northern Ireland in 2017.

Type of support:         Core/General Funding

Funding:£25,000Direct Financial Support  

Grant to support advocacy support post in England, Scotland and Wales in 2017.

Type of support:          Core/General Funding

Funding:£17,000Direct Financial Support  

Financial support for the MPS National Conference on 7th-9th July 2017.

Type of support:          Core/General Funding

Funding:£15,000Direct Financial Support  

Financial support for the MPS I Expert & Patient meeting - November 2017.

Type of support:          Core/General Funding

Funding:£1,000Direct Financial Support  

Financial support for an information awareness and support day for member families around 15th May 2017.

Multiple Sclerosis International Federation

Type of support:           Project Funding

Funding:US$ 12,600Direct Financial Support 

Access for Effective Treatment and Healthcare. MISF will recruit an expert to lead the programme, conduct detailed research and bring together experts from our membership - with a few carefully selected external experts - to discuss the challenges and their solutions to date.

Type of support:           Project Funding

Funding:US$ 50,000Direct Financial Support  

Middle East Capacity Building. The 2017-19 Arab Region-wide Programme will contribute to the Objective 'Stronger MS organisations in countries with challenging socioeconomic conditions and a high level of need' within the Aim - A Stronger, broader MSIF movement made up of effective MS organisations, engaged individuals and strategic international collaborations.

Type of support:           Project Funding

Funding:US$ 25,000Direct Financial Support 

Latin America Capacity Building. Help to establish cross-border and international relationships between MS organisations in the region. Provide opportunities for both MSIF members and non-member organisations, which will increase long term buy-in to the programme. Enable MSIF to assess a number of countries' readiness for a focused country-specific programme.

Type of support:           Project Funding

Funding:US$ 25,000Direct Financial Support  

To support MSIF activities on World MS Day.

Type of support:           Project Funding

Funding:US$ 12,500Direct Financial Support  

Assist MSIF to produce the 2017 Atlas of MS.

Type of support:           Project Funding

Funding:US$ 93,000Direct Financial Support 

Establish an international communications network within MSIF to enhance the capability of the organisation.

MS Society (Muscular Sclerosis Society)

Type of support:          Core/General Funding

Funding:£12,000 Direct Financial Support 

To support the MS Life exhibition organised by the MS Society at the 2016 ECTRIMS meeting, paid in 2017.

Type of support:          Core/General Funding

Funding:£7,800 Direct Financial Support  

Sponsorship towards MS Frontiers which is designed to engage younger researchers, ensuring the next generation of scientists and clinicians commit to a career in MS Research.

Multiple Sclerosis Trust Ltd

Type of support:          Contracted Services/Fees for Services

Funding:£312              Direct Financial Support 

Sponsorship towards World vs MS Project.

Type of support:          Project Funding

Funding:£75,000 Direct Financial Support 

Contribution towards the 1st yr of the MS Trust Specialist Nurse Programme, a new programme to improve access to MS Specialist Nurses in under resourced areas.

Type of support:          Contracted Services/Fees for Services

Funding:£1,200           Direct Financial Support 

To support dissemination of the MS Service Toolkit at training events April/May 2017.

Type of support:          Core/General Funding

Funding:£30,000 Direct Financial Support 

To support the MS Trust Annual Conference.

Type of support:          Project Funding

Funding:£1,800 Direct Financial Support 

To support the MS Trust Annual Conference.

Muscular Dystrophy UK

Type of support:          Core/General Funding

Funding:£6,000           Direct Financial Support 

Sponsorship of the 9th Neuromuscular Translational Research Conference to be hosted by MRC Centre for Neuromuscular Diseases & the Muscular Dystrophy Campaign.

Type of support:          Project Funding

Funding:£15,000 Direct Financial Support  

Support to create an e-learning module for paediatric physiotherapists seeing children/young people affected by muscle-wasting conditions.

National Centre for Young Epilepsy (NCYPE)

Type of support:          Project Funding

Funding:£20,000 Direct Financial Support 

Support for the 'Annual Paediatric Epilepsy Research Retreat 2017'.

National Rheumatoid Arthritis Society (NRAS)

Type of support:          Project Funding

Funding:£5,000 Direct Financial Support 

To support the core work of NRAS in providing assistance to and campaigning on behalf of people with Rheumatoid Arthritis.

Type of support:          Contracted Services/Fees for Service

Funding:£500 Direct Financial Support 

NRAS will provide a volunteer patient to present to Sanofi Genzyme employees about the impact of Rheumatoid Arthritis on their life and management of their condition.

Type of support:          Project Funding

Funding:£1,000 Direct Financial Support  

Financial support towards their attendance at the BSR conference in Birmingham in April 2017.

Type of support:          Contracted Services/Fees for Service

Funding:£669 Direct Financial Support  

NRAS organised & supported a volunteer patient speaker to speak to Sanofi employees about living with Rheumatoid Arthritis.

Type of support:          Contracted Services/Fees for Service

Funding:£527 Direct Financial Support  

NRAS organised and supported a speaker to present Rheumatoid Arthritis to health jornalists in the context of overall impact and burden on general health and quality of life.

Niemann-Pick UK

Type of support:          Core/General Funding

Funding:£18,000 Direct Financial Support  

Towards the costs of supporting families with Niemann-Pick in the UK.

Revive MS Support

Type of support:          Project Funding

Funding:£20,000 Direct Financial Support 

Funding to support Revive MS to deliver a Physiotherapy service to people with MS.

Shift.MS

Type of support:          Project Funding

Funding:£15,000 Direct Financial Support 

Support ‘The Energy Volunteer Network’.

Type of support:          Contracted Services/Fees for Service

Funding:£ 900 Indirect Financial Support  

Travel expenses of a Shift MS selected patient speaker.

Type of support:          Project Funding

Funding:£23,950         Direct Financial Support  

A series of MS reporters videos on ‘Top 3 things everyone should know about MS’.

Type of support:          Project Funding

Funding:£69,200 Direct Financial Support  

Sustaining the creative producer role put in place to deliver the  ‘SHIFT.MS vs. MS Interpreted extensions 2017’ project.

Spinal Muscular Atrophy Support UK

Type of support:          Project Funding

Funding:£20,000 Direct Financial Support  

Contribution towards an outreach service for families affected by SMA.

The Brain Tumour Charity

Type of support:          Project Funding

Funding:£1,500           Direct Financial Support

A donation to The Brain Tumour Charity in memory of a colleague.

The Cure and Actions for Tay-Sachs (CATS)

Type of support:          Core/General Funding

Funding:£5,000 Direct Financial Support 

Financial support for the 5th annual family conference for the Cure and Action for Tays-Sachs (CATS) Foundation on 17th-18th June 2017.

The National Federation of Prostate Cancer Support Groups (TACKLE)

Type of support:          Core/General Funding

Funding:£7,500 Direct Financial Support 

To support the core work of Tackle in providing assistance to and campaigning on behalf of men with prostate cancer.

The Neurological Alliance

Type of support:          Core/General Funding

Funding:£10,000 Direct Financial Support 

Resources to support 4 programme areas that form the core of public policy activity in 2017.

The Patients Association

Type of support:          Core/General Funding

Funding:£10,000 Direct Financial Support 

Membership to become a corporate member of the Patients Association.

Thyroid Cancer Alliance

Type of support:          Project Funding

Funding:£11,765 Direct Financial Support  

Booklet explaining to children whose parent (Mother or Father) is having radioactive iodine (RAI) ablation or therapy.

World Hepatitis Alliance

Type of support:          Core/General Funding

Funding:€ 8,393 Direct Financial Support  

Core funding to World Hepatitis Alliance to support introduction of Hepatitis A Vaccination programmes.

Updated: March 27, 2018