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Profile of registrant

Motor Neurone Disease Association

Identification number in the register: 67865376622-75
Registration date: 09/09/11 10:15:58

The information on this organisation was last modified on 28/08/13 12:03:27
The date of the last annual update was 28/08/13 10:52:09

Registrant : Organisation or self-employed individual

Name/company name: Motor Neurone Disease Association
Legal status: Charity
Website address:


Section: III - Non-governmental organisations
and more precisely: Non-governmental organisations, platforms and networks and similar

Person with legal responsibility

Surname, Name: Mr  Chris James
Position: Director of External Affairs

Permanent person in charge of EU relations

Surname, Name: Mrs  Alison Railton
Position: Public Affairs Manager

Contact details:

Contact details of organisation's head office: 10-15 Notre Dame Mews 
Northampton NN1 2BG
Telephone number: (+01604) 250505
Fax number: (+01604) 624726
Other contact information:

Goals / remit

Goals / remit of the organisation: The Motor Neurone Disease Association is the only national charity in England, Wales and Northern Ireland that funds and promotes global research into the disease and provides support for people affected by MND.
The organisation's fields of interests are:
  • national

Number of persons engaged in activities falling under the scope of the Transparency Register

Number of persons: 10
Complementary information:

Persons accredited for access to European Parliament premises

No accredited persons


Main EU initiatives covered the year before by activities falling under the scope of the Transparency Register:

Response to consultation on clinical trials directive.

Fields of interest for e-mail alerts on consultations and roadmaps;

Fields declared by the organisation:
  • Research and Technology


Total number of members that are natural persons: 130
Number of member organisations:
Member organisations (Number of members) :
The organisation has members/is represented in the following country(countries):

Complementary information:


Information on (i) organisation's membership of any associations/federations/confederations or (ii) relationships to other bodies in formal or informal networks.

Association of Medical Research Charities

Financial data

Financial year: 02/2010 - 01/2011
Total budget: 14,000,000
of which public financing: 0
- from European sources:
- Procurement: 0
- Grants: 0
- from national sources: 0
- from local/regional sources: 0
from other sources: 14,000,000
- donations: 14,000,000
- contributions from members: 0
Estimated costs to the organisation directly related to representing interests to EU institutions in that year: < 50000  €
Other (financial) information provided by the organisation:

Code of conduct

By its registration the organisation has signed the Transparency Register Code of Conduct.