Report European Infertility Alliance

1
Report European Infertility Alliance

• Working Groups
• Database
• EU Advocacy
• Communication
• More Children For Europe
• Income Generations
• Statutes
• Conrad Engler, Secretary EIA

2
Working GroupDatabaseFirst results of the
questionnaire
3
What Why ?

• 2 parts
• Members Questionnaire
• Clear procedure on how to become a member
• Overview of content of our members,
  transparency
• To be added 1 central contactperson per group
  (name, tel nr, e-mail address)
• Law and Regulation
• To understand YOUR situation within European
  context
• Strong tool for national / EU lobby work
• Possible medical expansion, ESHRE
• Overview book as Alzheimer Europe (EU funding)

4
Who on 28/06/2007 ?

• Belgium, De Verdwaalde Ooievaar (The Lost Stork
  Fertility Network Belgium)
• Spain, Genera (Help to Fertility Association)
• Italy, Associazione Mammeonline (Mammeonline
  Association)
• The Netherlands, Freya (Asociation for people
  with fertility problems)
• Slovakia, Bocian (Civil Association Stork)
• France, Maia (Association Maia)
• Sweden, private person Lena Gimbergsson
• Germany, Wunschkind e.V. (Wishchild, Charitable
  Organisation)
• Finland, Lapsettomien Yhdistys Simpukka ry
  (Finnish Infertility Association)
• Switzerland, Verein Kinderwunsch (Association
  Child Wish)
• and 12 England and Ireland not integretated jet
  (because of technical reasons)

5
What to expect today

• Results are first draft
• Open for improvement
• What to improve, expand working group
• Interpretation to be checked by each country /
  group
• Results are named per country

6
Status member organizations (1)

• Website
• all have one
• Newsletter
• all have one, not Spain
• Between 25 000 ( Italy Slovakia) and 500
  (Belgium) copies
• Members
• Patients all
• Family and friends all, not The Netherlands
• Nurses / midwifes only Belgium, Spain, Germany
• Medical Doctors only Belgium, Spain
• Psychologists only Belgium, Spain, Germany,
  Finland
• IVF centres only Finland

7
Status member organizations (2)

• Number of members
• Between 220 (Switzerland) and 25 000 (Italy)
• Number of boardmembers
• 5, 6 ,7 up to 15 in France and 200 in Italy
• Kind of boardmembers
• Patients all
• Professionals only Belgium, Spain, Slovakia,
  Germany

8
Status member orgnizations (3)

• Date of start
• Between 1985 (The Netherlands) and 2006 (Belgium)
• Advisory Board
• Have one Belgium, Spain, Slovakia, Switzerland
• Who is part in most cases all medical experts
• Membership fees
• Only Belgium free membership
• Most groups have different fees for individuals
  and couples / professionals
• Between 7,7 (Slovakia) and 150 (Italy)

9
Status member organizations (4)

• Yearly budget
• Between 12 000 (Spain) and 215 000 (The
  Netherlands)
• Where does the money come from ?
• Membership fees between 0 (Belgium) and 80
  (France)
• Government only Spain, The Netherlands (40),
  France (20) and Finland (60)
• Hospitals only Belgium and Finland
• Pharmaceutical companies Belgium, Spain, The
  Netherlands, Germany, Switzerland
• Fundraising only Belgium, Spain and Finland
• Donations only Belgium, Italy and The
  Netherlands

10
Status member organizations (5)

• Number of volunteers
• Between 2 (Slovakia) and 70 (The Netherlands)
• Paid staff
• Secretary Spain, The Netherlands (9h/wk),
  France, Germany
• The Netherlands has also Chief executive
  (32h/wk), Policy officer (20h/wk), Communications
  officer (20h/wk)

11
What Why ?

• 2 parts
• Members Questionnaire
• Clear procedure on how to become a member
• Overview of content of our members,
  transparency
• To be added 1 central contactperson per group
  (name, tel nr, e-mail address)
• Law and Regulation
• To understand YOUR situation within European
  context
• Strong tool for local / EU lobby work
• Possible medical expansion, ESHRE
• Book Alzheimer Europe, EU funding

12
Legal situation
13
Reimbursement
14
Number of cycles / population
15
Fill out the questionnaire !
http//www.freya.nl/web_enquetes/eia.php
16
EU advocacy

• European Commission in Brussels
• Active role in European Patients Plattform
• Direct contacts to the European Commission
• Influence EU via national health authorities
• Joint venture with ESHRE
• Patient organizations and ART specialists work
  together
• European Parliament
• Direct contacts with members of parliament
• Show the influence of different regulations in
  the countries for the ART tourism through Europe
  with negative impacts for concerned couples and
  the donors in poorer countries

17
Communication

• Internal
• Improove internal communication and consulting of
  the members
• E-Mail-Newsletter for members and interested
  associates
• Internal and external
• New homepage www.fertilityeurope.eu
• Key actuality on the website
• Background information about projects
• External
• Media relations on European level, support for
  national level
• Create news value with good human touch stories,
  surveys and overviews about different
  legislations (questionnaire, IVF tourism)

18
The future Proud to be part of the ICSI family,
but ...

• Internal discussion in the EIA about democracy,
  elections, transparency of decision making and
  finance with consequent consulting of member
  organization, including revision or new statutes
  as well as new name and claim
• Open process of discussion and decisions
  depending on the feedbacks of member
  organizations
• Strong feeling in the Coordination Committee of
  EIA to stay in the ICSI family and to strengthen
  the relationship to ICSI, but to develop a new
  strategy towards a strong European Coalition and
  Network