Top of this page
Skip navigation, go straight to the content

UK Public Declarations Patient Organisations 2015/2014

UK Patient Organizations

UCB works with a number of patient organizations in the UK. In order that these activities are transparent, clause 27.7 of the UK ABPI Code of Practice 2016 edition requires that each company must make publicly available, at a national or European level, a list of patient organizations to which it provides financial support and/or significant indirect/non-financial support, which must include short descriptions of the nature of the support that is sufficiently complete to enable the average reader to form an understanding of the significance of the support.

The following list details all patient organizations that have been supported financially or through a significant indirect / non-financial support by UCB in the UK and provides a short description of the activities commenced / ongoing on or after 1st January 2015 until 31st December 2015. Total funding (in UK pound sterling or euros) for the specified period for each patient organization appears after the description of support.

 

___________________________________________________________________________________

 

1.      Age Cymru

 

UCB provided financial support for the organization to hold fringe meetings in conjunction with the Chartered Society of Physiotherapists at Welsh political party conferences to raise the awareness of falls in the elderly.

 

£682.00

_______________________________________________________________________________

 

2.      All Wales Epilepsy Forum

 

UCB provided monies towards the catering costs at a Welsh epilepsy forum hosted by this umbrella organization. UCB is a member of this forum alongside Epilepsy Action, Epilepsy Wales & SUDEP Action.

 

£198.97

______________________________________________________________________________

 

3.      Arthritis Care Northern Ireland

 

UCB provided a grant to support the organization’s annual Health Professional Lecture.

   £650.00

_____________________________________________________________________________________

 

4.      Beat Parkinson’s

UCB supported the organization to launch a fundraising challenge – The Climb.

£5,000.00

_____________________________________________________________________________________

 

5.      Crohn’s and Colitis UK

 

UCB employees won an award to donate to a charity of their choice and chose to make a donation to this organization.

£1,000.00

______________________________________________________________________________

 

6.      Epilepsy Action

 

UCB provided sponsorship for the development of an Epilepsy Commissioning Toolkit: a web based hub containing information and data on epilepsy for Clinical Commissioning Groups. 

 

£25,000.00

______________________________________________________________________________

 

7.      Epilepsy Alliance

 

UCB provided funding towards a 2 day Epilepsy Nurse Induction Course run by Epilepsy Alliance (Epilepsy Action and Epilepsy Nurses Association)

 

£2,722.00

______________________________________________________________________________

 

8.      Epilepsy Society

 

UCB provided a grant for the production of “Living with Epilepsy” videos focusing on frequently asked questions about epilepsy.

£4,920.00

______________________________________________________________________________

 

9.      Encephalitis Society

 

UCB paid a donation to the organization in lieu of an honorarium for a speaker at a UCB organized meeting.

 

£500.00

______________________________________________________________________________

 

10.   EPDA (European Parkinson’s Disease Association)

 

UCB supported Board travel grants, Political Affairs & Policy and Projects Development:

 

a) EPDA digital publication

 

b) PDG (Parkinson’s Development Group) Think Tank meetings.

 

UCB supported the My PD Journey Project.

 

 

Euro 25,000.00

__________________________________________________________________________

 

11.   ITP (Idiopathic Thombocytopenia Purpura) Support Association

 

UCB gave the organization funding towards the cost of producing its quarterly journal “The Platelet” and running the ITP Patient Convention in 2015.

 

£3,000.00

__________________________________________________________________________

 

12.   Lupus UK

UCB provided a grant towards the cost of 2 representatives of the organization attending an International Congress on Systemic Lupus Erythematosus in Vienna.                                                                                                                                                                                                                                                                                                                            £700.00

__________________________________________________________________________

 

13.   Lupus Europe

 

UCB provided support for a planning meeting held at EULAR in Rome. UCB supported the organization’s 2015 annual convention held in Vienna. UCB supported a Lupus Europe organized patient panel in Brussels.

 

                                                                                                                                    Euro 35,000.00

__________________________________________________________________________

 

14.   Myasthenia Gravis Association (Myaware)

UCB provided funding to support the production of its Myaware quarterly journal.                                                                                                                                                                                                                                                                                                                     £2,000.00

__________________________________________________________________________

 

15.   NASS (National Ankylosing Spondylitis Society)

 

UCB provided funding to support an awareness campaign aimed at improving early diagnosis of Axial Spondyloarthritis.

 

                                                                                                                        £10,000.00

 

 

__________________________________________________________________________

 

16.   Neurological Alliance

 

The Neurological Alliance is a campaigning organization – the collective voice of over 80 brain and spine charities and other key stakeholders in England working towards better services for the millions of people in England living with a neurological condition. UCB supported this organization in 2015.

 

                                                                                                                        £10,000.00

__________________________________________________________________________

 

17.   Northern Neurological Alliance

 

UCB provided a grant for the development of a monitoring and evaluation tool for people with long term neurological conditions receiving domiciliary care. On request UCB provided an existing UCB PD Care Home Progress Chart for use during the development of the tool.

 

                                                                                                                        £21,696.00

__________________________________________________________________________

 

18.   NRAS (National Rheumatoid Arthritis Society)

 

 A donation was made to the organization to support a fundraising event – The Great North Run.

 

                                                                                                                        £500.00

__________________________________________________________________________

 

19.   Parkinson’s UK

 

UCB paid a third party to convert PUK’s educational materials into digital format. Grants were provided to produce 2 patient digital stories and print postcards advertising online courses. UCB paid donations to the organization in lieu of honoraria for speakers at 2 UCB organized meeting. On request UCB allowed PUK the right to use a PD Care Home Progress Chart in its training modules.

                                                                                                                        £12,527.20

__________________________________________________________________________

 

20.   RLS-UK

 

UCB provided part of the funding required to produce new patient information booklets, a Facebook campaign and incorporation of a sign language function into their website.

 

                                                                                                                        £3,000.00

 

__________________________________________________________________________

 

21.   Sexual Advice Association

 

UCB gave a donation to support the work of the organization.

 

                                                                                                                        £500.00

 

Please note that UCB Corporate & other UCB affiliates may also work with UK based patient organisations, full details of which can be found at our corporate website –

http://www.ucb.com/patients/programmes/patients_europe/2015


Updated:  March 2016

 

 

 

 

 

 

 

UK Patient Organisations 2014

UCB works with a number of patient organisations in the UK. In order that these activities are transparent, clause 27.7 of the UK ABPI Code of Practice 2015 edition requires that each company must make publicly available, at a national or European level, a list of patient organisations to which it provides financial support and/or significant indirect/non-financial support, which must include short descriptions of the nature of the support that is sufficiently complete to enable the average reader to form an understanding of the significance of the support.

The following list details all patient organisations that have been supported financially or through a significant indirect / non-financial support by UCB in the UK and provides a short description of the activities commenced / ongoing on or after 1st January 2014 until 31st December 2014. Total funding (in UK pound sterling or euros) for the specified period for each patient organisation appears after the description of support.

___________________________________________

 1    All Wales Epilepsy Forum

UCB provided monies towards the catering costs at a Welsh epilepsy forum hosted by this umbrella organisation. UCB is a member of this forum alongside Epilepsy Action, Epilepsy Wales & SUDEP Action.

Indirect financial support: £127.74                       

___________________________________________

2    Alzheimer’s Society

A UCB employee took part in a charity event to raise monies which were then donated to this patient organisation.                                                                                                                

Financial support: £500.00      

___________________________________________

3    Arthritis Care NI

We supported their educational event designed to increase the awareness of arthritis in Northern Ireland.

Financial support: £650.00

___________________________________________

4    Arthritis Research UK

We supported their educational programmes designed to increase the awareness of arthritis in the UK.

Financial support: £475.00

___________________________________________

5    Cure Parkinson's Trust

Upon an unsolicited request, UCB provided The Cure Parkinson’s Trust with an electronic   version of the UCB WellBeing Map; an item designed to enable patients to help identify their PD symptoms and aid a discussion of their PD with their treating physicians. UCB also provided a meeting room & subsistence for this patient organisation at its headquarters in Belgium.

Non-financial support: £150.00 & Euros 232.95

___________________________________________

6    European Parkinson’s Disease Association

UCB provided support for the updating of the EPDA website & with translated versions of the UCB WellBeing Map. UCB supported the patient organisation in developing political affairs & policy activity.  UCB supported EPDA’s online magazine designed to ensure greater disease awareness for Parkinson’s in Europe.  UCB provided support for EPDA's 'Move for Change'  project & assisted the EPDA with the data analysis and preparation and publication of a report after the survey was conducted.

Upon an unsolicited request, UCB provided this patient organisation with 150 printed versions of the UCB WellBeing Map; an item designed to enable patients to help identify their PD symptoms and aid a discussion of their PD with their treating physicians. UCB also paid for the postage costs to send these items to an educational conference.                                                                                  

Financial support: Euros 30,000.00
Non-financial support: £443.45

____________________________________________

7    Epilepsy Action (British Epilepsy Association)

We provided support for disease awareness & information days for this national epilepsy charity. These information days ensure that people receive information locally to where they live & can meet & talk with other people with the same condition. UCB colleagues volunteered their time to work on a fundraising event during National Epilepsy Week.

Financial support:  £1,200.00
Non-financial support: £420.00

____________________________________________

8    Epilepsy Connections

This small, grassroots charity delivers epilepsy information, support and training services to patients in the Greater Glasgow, Clyde and Forth Valley areas. We supported a weekend break for families that offered an opportunity for children with epilepsy (& their parents & siblings) to meet with others in the same situation through various activities.

Financial support: £2,000.00

____________________________________________

9    Epilepsy Scotland

UCB subscribed to membership of this patient organisation in 2014. UCB colleagues volunteered their time to work on a number of fundraising activities during National Epilepsy Week.

Financial support: £250.00
Non-financial support: £1,090.00

___________________________________________

10    Epilepsy Society (National Society for Epilepsy)

UCB colleagues volunteered their time to work on a gardening project at the National  Epilepsy Centre. On an unsolicited request, we provided support for a charity fundraising event. On an unsolicited request, we funded a scoping project to identify the specific & unique issues around epilepsy for individuals aged 60 years and over. We also supported the catering costs & room hire at the Royal College of General Practioners to host a working group of epilepsy patients & healthcare professionals.

Financial support: £8,348.00
Non-financial support: £3,000.00

___________________________________________

11    NASS (National Ankylosing Spondylitis Society)

On an unsolicited request, UCB provided support towards their 2014 Members’ Day, an event intended to brief their patient members on the latest and the most important information about Ankylosing Spondylitis.

Financial support: £10,000.00            ___________________________________________

12    NRAS (National Rheumatoid Arthritis Society)

UCB colleagues organised internal fundraising activities and the funds collected were donated to the patient organisation. On an unsolicited request, we also provided use of our internal meeting rooms & subsistence for an independent meeting the charity organised.                       

Financial support: £656.36
Non-financial support: £225.00            ___________________________________________

13    Neurological Alliance

The Neurological Alliance is a campaigning organisation – the collective voice of over 70 brain and spine charities and other key stakeholders in England working towards better services for the millions of people in England living with a neurological condition.UCB subscribed to membership of the Neurological Alliance in 2014.

Financial support: £8,000.00

___________________________________________

14    Paget’s Association

UCB supported a scientific workshop designed to increase the understanding of bone disease in the UK.

Financial support: £15,000.00

___________________________________________

15  Parkinson’s UK

A UCB employee took part in various charity events to raise monies which were then donated to this patient organisation.

Financial support: £500.00

___________________________________________

16    Rare Diseases UK

UCB provided a grant to this rare diseases umbrella organisation that supports patient groups of rare, mainly genetic conditions.

Financial support: £8,400.00

___________________________________________

17    RLS UK

UCB supported educational activities to help promote awareness of RLS in the UK. On an unsolicited request, we provided the UCB RLS-Monitor, which is designed to enable patients to help identify their RLS symptoms and aid a discussion of their RLS with their treating physicians.

Financial support: £2,000.00
Non-financial support: £1,292.00              ____________________________________________

18    Scottish Epilepsy Initiative

On an unsolicited request, UCB supported an online forum for young people to interact with their peers, gain emotional/social support and share experiences of epilepsy in a safe, supportive  environment.

Financial support: £75,000.00

___________________________________________

19    SUDEP Action (Epilepsy Bereaved)

Delegate fees collected at a UCB organized meeting attended by UK HCPs, were donated to SUDEP.

Financial support: £760.00

___________________________________________

 

Please note that UCB Corporate & other UCB affiliates may also work with UK based patient organisations, full details of which can be found at our corporate website –

http://www.ucb.com/patients/programmes/patients_europe/2014

 

Updated:  March 2015