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Report European Infertility Alliance

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  1. Report European Infertility Alliance • Working Groups : • Database • EU Advocacy • Communication • More Children For Europe • Income Generations • Statutes Conrad Engler, Secretary EIA

  2. Working GroupDatabase:First 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