Registrant : Organisation or self-employed individual
| Name/company name: |
European Parkinson's Disease Association |
| Acronym: |
EPDA
|
| Legal status: |
AISBL
|
| Website address: |
http://www.epda.eu.com
|
Sections
| Section: |
III - Non-governmental organisations |
| and more precisely: |
Non-governmental organisations, platforms and networks and similar |
Person with legal responsibility
| Surname, Name: |
Mrs
Amanda Worpole
|
| Position: |
Interim Secretary General |
Permanent person in charge of EU relations
| Surname, Name: |
Mrs
Amanda Worpole
|
| Position: |
Interim Secretary General |
Contact details:
| Contact details of organisation's head office: |
1 Northumberland Avenue Trafalgar Square
London WC2N 5BW
UNITED KINGDOM
|
| Telephone number: |
(+44) 2078725510 |
| Fax number: |
(+44) 2078725611 |
| Other contact information: |
Regus EU Parliament
37 Square de Meeus
B-1000 Brussels
Belgium
Tel.: +32 (0) 2 791 7747
Fax: +32 (0) 2 791 7900
|
Goals / remit
| Goals / remit of the organisation: |
The EPDA is the only European umbrella organisation for
Parkinson’s disease and represents 45 member organisations
advocating for the rights and needs of more than 1.2
million people with Parkinson’s and their families.
What does the epda do?
By working with its member organisations, who represent the
needs of individual people with Parkinson’s and their families at a national level, the EPDA aims to:
- ensure equal and timely access to prompt diagnosis and
good-quality Parkinson’s disease care across Europe by
raising standards and reducing existing inequalities
- increase public awareness of Parkinson’s disease as a
priority health challenge
- help reduce stigma and remove discrimination against
people with Parkinson’s disease
- support the development of national Parkinson’s disease
organisations throughout Europe.
|
|
The organisation's fields of interests are:
|
|
Number of persons engaged in activities falling under the scope of the Transparency Register
| Number of persons: |
6
|
|
Complementary information:
|
Amanda Worpole - Interim Secretary General
Lizzie Graham - Director of Fundraising and Global Communications
Heather Clark - Political Affairs Officer
Chiu Keung Man - Head of Operations
Knut-Johan Onarheim - EPDA President
Susanna Lindvall - EPDA Vice-President
|
Persons accredited for access to European Parliament premises
| First name
|
Surname
|
Start Date |
End Date |
|
David
|
Tanoh
|
11/01/13
|
08/08/13
|
|
Amanda
|
Worpole
|
19/03/13
|
15/03/14
|
|
HEATHER
|
CLARKE
|
11/10/12
|
05/10/13
|
Activities
Main EU initiatives covered the year before by activities falling under the scope of the Transparency Register:
|
1. To maintain and increase funding for research into Parkinson’s disease under the next framework programme.
2. Improve data collection across Europe as well as establish standards for the monitoring and reporting
of Parkinson’s disease across EU member states.
3. To make provision for Parkinson’s disease organisations so their members have a voice when vital decisions are made about their healthcare.
4. To ensure EU policies on neurodegenerative diseases are fully integrated into current EU health initiatives.
|
Fields of interest for e-mail alerts on consultations and roadmaps;
| Fields declared by the organisation: |
- Development
- Economic and Financial Affairs
- Education
- Employment and Social Affairs
- Public Health
- Regional Policy
- Research and Technology
- Trans-European Networks
|
Structure
| Total number of members that are natural persons: |
0 |
| Number of member organisations: |
44 |
| Member organisations (Number of members) : |
- Parkinson Selbsthilfe Österreich-Dachverband (2,800 members)
- Association Parkinson Francophone (250 members)
- Vlaamse Parkinson Liga vzw (VPL) (1,600 members)
- Fondazia Parkinsonism (100 members)
- Hrvatske udruge bolesnika s poremećajem pokreta (HUBPP) (297 members)
- Cyprus Parkinson's Disease Association (CPDA) (200 members)
- Společnost Parkinson, o.s. (1,987 members)
- Parkinsonforeningen (7,300 members)
- Estonian Parkinson`s Disease Association (214 members)
- Parkinsonfelagið (120 members)
- Suomen Parkinson-liitto ry (8,000 members)
- Fédération Française des Groupements de Parkinsoniens (FFGP) (1,483 members)
- France Parkinson (8,500 members)
- Parkinson-Hilfe Deutschland e.V. (400 members)
- EPIKOUROS kinisis (800 members)
- Hellenic Association of Parkinson Disease Patients (HAPDP) (200 members)
- Delta Magyar Parkinson Egyesület (148 members)
- Parkinsonssamtökin á Íslandi (450 members)
- Parkinson's Association of Ireland (PAI) (1,342 members)
- Israel Parkinson Association (IPA) (1,057 members)
- Azione Parkinson (Lazio) (250 members)
- Parkinson Italia (5,000 members)
- Lietuvos Parkinsono Draugij (450 members)
- Parkinson Luxembourg a.s.b.l (500 members)
- Malta Parkinson's Disease Association (47 members)
- Norges Parkinsonforbund (4,490 members)
- Fundacja "Żyć z Chorobą Parkinsona" (900 members)
- Kracow Parkinson's Disease Association (110 members)
- Stow. Choroby Parkinsona (120 members)
- Stowarzyszenie Osób Niepełnosprawnych AKSON (100 members)
- Associação Portuguesa de Doentes de Parkinson (APDPk) (2,000 members)
- Asociatia Antiparkinson (500 members)
- Društvo TREPETLIKA (660 members)
- Federación Española de Parkinson (11,000 members)
- Neurologiskt Handikappades Riksfördund (NHR) (1,310 members)
- ParkinsonFörbundet (8,001 members)
- Parkinson Schweiz (5,200 members)
- Parkinson Vereniging (8,523 members)
- Parkinson Hastalığı Derneği (220 members)
- The Ukrainian Parkinson Disease Society (280 members)
- Parkinson's UK (34,000 members)
- Georgian International Charitable Union of Parkinson's Disease Patient (100 members)
- The Regional Non-profit Organisation for the advancement of Parkinsoni (150 members)
- Serbian Association Against Parkinson's Disease (100 members)
|
| The organisation has members/is represented in the following country(countries): |
- AUSTRIA
- BELGIUM
- BULGARIA
- CYPRUS
- CZECH REPUBLIC
- DENMARK
- ESTONIA
- FINLAND
- FRANCE
- GERMANY
- GREECE
- HUNGARY
- IRELAND
- ITALY
- LITUANIA
- LUXEMBOURG
- MALTA
- NETHERLANDS
- POLAND
- PORTUGAL
- ROMANIA
- SLOVENIA
- SPAIN
- SWEDEN
- UNITED KINGDOM
- FAROE ISLANDS
- GEORGIA
- ICELAND
- ISRAEL
- NORWAY
- RUSSIA, FEDERATION OF
- SERBIA
- SWITZERLAND
- TURKEY
- UKRAINE
|
|
Complementary information:
|
|
Networking
Information on (i) organisation's membership of any associations/federations/confederations or (ii) relationships to other bodies in formal or informal networks.
|
- Association of Physiotherapists in Parkinson's Disease Europe [APPDE]
- Atlantic Euro Mediterranean Academy of Medical Science [AEM AMS]
- European Alliance for Access to Safe Medicines [EAASM]
- European Brain Council [EBC]
- European Federation of Neurological Societies [EFNS]
- European Medicines Agency [EMA]
- European Neurological Society [ENS]
- European Patients' Forum [EPF]
- EPPOSI
- National Tremor Foundation [NTF]
- The Cure Parkinson's Trust [CPT]
- The Movement Disorder Society [MDS]
- EFPIA
|
Financial data
| Financial year: |
01/2011
-
12/2011
|
|
Total budget:
|
702,738
|
€
|
|
of which public financing:
|
|
€
|
|
- from European sources:
|
|
- Procurement:
|
|
€
|
|
- Grants:
|
|
€
|
|
- from national sources:
|
|
€
|
|
- from local/regional sources:
|
|
€
|
|
from other sources: |
702,738
|
€
|
|
- donations:
|
0
|
€
|
|
- contributions from members:
|
24,571
|
€
|
|
- Sponsorship :
|
335,572
|
€
|
|
- General Assembly :
|
28,784
|
€
|
|
- Project funding :
|
312,407
|
€
|
|
- Sale of merchandise :
|
1,404
|
€
|
|
|
Estimated costs to the organisation directly related to representing interests to EU institutions in that year:
|
100000
€ - 150000
€
|
Other (financial) information provided by the organisation:
|
Please refer to the EPDA's 2011/2012 Annual Report:
http://www.epda.eu.com/en/about-the-epda/our-organisation/annual-reports/
|
|
