1. executive workshop
Making our network stronger
Raising awareness on prevention
Partnerships and networking (processes and
importance of partners in your campaign)
Maria Cristina Dieci ‐ President A.S.B.I. Onlus
Mario Orgiana – President A.S.B.I. Sardegna Onlus
28th June 2011
Brussels
2. The Italian scenario:
Associazione Spina Bifida Italia
ASBI Onlus ‐ Associazione Spina Bifida Italia – is the no‐profit National Association
active in preventing Spina Bifida and guaranteeing better quality of life for patients
and their families alike.
The Association was founded in 1988.
GOALS
• Primary and tertiary prevention
• Research
• Rights
• Network
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3. The Italian scenario:
Coordinamento Nazionale Associazioni Spina Bifida
The Coordinamento Nazionale delle Associazioni Spina Bifida was founded in
February 2009 as a result of the joint effort of local Spina Bifida Associations.
GOALS
• Networking
• Joining forces and resources
• Expand the array of national initiatives
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4. The Italian scenario:
Network Italiano Promozione Acido Folico
The ASBI and Coordinamento are members of the Network Italiano per la Promozione
dell’Acido Folico, founded in 2004, following the interest of the scientific community and the
Italian Healthcare System. The Network is comprised of very diverse associations and
institutions.
GOALS
• Promoting the use of folic acid in the periconceptional period
• Involving associations, healthcare centres, institutions
• Coordinate the initiatives
THE NETWORK THE ADHESIONS 4
6. Spina Bifida
and the prevention campaigns
Spina Bifida is the most common malformation affecting the Central Nervous System.
The incidence of this disease in Italy is 4‐6 cases every 10,000 children.
The dietary regime may affect prevalence and folic acid supplementation in women before
conception can reduce risk by 50‐70%.
Italy is the first country in the world that provides free of charge 0.4 mg Folic Acid to all
women who plan to have a child, without time limitations.
Only 60‐65% of Italian children are born of planned pregnancies
Only 13%‐33% of Italian women take folic acid correctly (the percentage for foreign women
varies from 1% to 14%)*
In Italy the mean yearly cost for a person with Spina Bifida is estimated around 10 thousand
Euros. The overall cost in a lifetime is approximately 360 thousand Euros.
Out of 165 Spina Bifida cases detected every year, 60 % are VTOP (Voluntary Termination of
Pregnancy)! The impact of VTOP after the prenatal diagnosis is remarkable and should be
computed among the economic and psychological toll caused by Spina Bifida.
High social and economic impact on the community.
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7. Spina Bifida
and the prevention campaigns
We are all fully aware of how important and effective prevention is.
Primary prevention is possible, simple and does not require any
sacrifices.
Primary prevention can reduce risk by 50‐70%.
This is why the ASBI, supported by the Coordinamento Nazionale
delle Associazioni Spina Bifida focused its efforts and energy on a
series of campaigns targeted to a range of goals and involving
different partners.
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10. Partnership and networking:
The COOP campaign for Spina Bifida prevention
In May 2009 ASBI and Coop set out on a joint project aimed at raising awareness nationwide in
terms of Spina bifida prevention, entitled “Io non concepisco una vita senza acido folico” (Life
without folic acid is inconceivable)
The goals of the campaign:
• Raising awareness among female consumers
and COOP customers
• Promoting folate‐rich diet
• Promoting Folic Acid intake.
The campaign turned into the symbol of a whole day
organized in Coop malls and shopping centres
nationwide.
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13. Partnership and networking:
Primary prevention in schools
The “Proteggi tuo figlio prima che nasca” (protect your son before birth) project is an initiative
designed three years ago thanks to the support of the Rotary International ‐ Gruppo Po, and
serves the goal of promoting congenital malformation prevention, including Spina Bifida, by
means of meetings with female high school students.
How important was Rotary’s involvement in
this campaign?
Over this first year of activities we met about
500 students who were informed and
briefed about the correct diet to avoid any
pathologies due to the improper closure of
the neural tube and consequently we also
reached out to the same number of families,
who should be added to the other contacts
we made through the media and press
coverage.
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14. Partnership and networking:
from the agency
• Technical partnership
• Financial partnership
• Networking
• Institutional patronage
• Media patronage
National
Companies Healthcare
•Communication System
•Events
•Press office
•Corporate fundraising
National Spina
Trade Bifida
Media associations Association
Coordination
It is very important to consider all criticalities which may affect the campaign
success as soon as they emerge 14
15. Partnership and networking:
Conclusions
Many efforts and commitments required
Human and financial resources are limited
A public primary prevention campaign is crucial
It is important to organize a world Spina Bifida day
It is crucial to detect and develop partnership and network projects at national and
international level
•Find ways to involve effective and long‐term partners
•Involving the people and groups that are close to our cause
•Involving the media and opinion leaders
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