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

The Italian scenario:Associazione Spina Bifida Italia

GOALS• Primary and tertiary prevention• Research• Rights• Network2

ASBI Onlus ‐ Associazione Spina Bifida Italia – is the no‐profit National Associationactive in preventing Spina Bifida and guaranteeing better quality of life for patientsand their families alike.The Association was founded in 1988.

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The Italian scenario:Coordinamento Nazionale Associazioni Spina Bifida

The Coordinamento Nazionale delle Associazioni Spina Bifida was founded inFebruary 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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The Italian scenario:Network Italiano Promozione Acido Folico

The ASBI and Coordinamento are members of the Network Italiano per la Promozionedell’Acido Folico, founded in 2004, following the interest of the scientific community and theItalian Healthcare System. The Network is comprised of very diverse associations andinstitutions.

GOALS• Promoting the use of folic acid in the periconceptional period• Involving associations, healthcare centres, institutions• Coordinate the initiatives

THE NETWORK THE ADHESIONS

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The Italian scenario:The ASBI partner network

HEALTHCARE

THIRD SECTOR

COMPANIES

INSTITUTIONS MEDIA

Over the years the Association has developed a network of national and international relations.  Forming relations and partnerships with all parts of society allows to find effective solutions to all requirements having to do with carrying out projects, campaigns and events.

Italy is the first country in the world that provides free of charge 0.4 mg Folic Acid to allwomen who plan to have a child, without time limitations.

Only 60‐65% of Italian children are born of planned pregnanciesOnly 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 thousandEuros. 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.

Spina Bifidaand the prevention campaigns

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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 beforeconception can reduce risk by 50‐70%.

High social and economic impact on the community. 

This is why the ASBI, supported by the Coordinamento Nazionaledelle Associazioni Spina Bifida focused its efforts and energy on aseries of campaigns targeted to a range of goals and involvingdifferent partners.

Spina Bifidaand the prevention campaigns

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We are all fully aware of how important and effective prevention is.Primary prevention is possible, simple and does not require anysacrifices.Primary prevention can reduce risk by 50‐70%.

RESOURCES

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The prevention campaigns:Partnership and networking development

NETWORKING PARTNERSHIP 

Primary prevention CAMPAIGNS

GOALS TARGET

HEALTHCARETHIRDSECTOR

INSTRUCTIONSMEDIA

COMPANIES

Criticalities

NEEDS>

Partnership and networking:The National Spina Bifida Week

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For 2011 ASBI Onlus and Coordinamento are promoting the eight edition of the “Spina Bifida Week”,  the main mobilisation and awareness‐raising event on this pathology in Italy.

The WEEK, first organized in 2004, provides the chance

of raising awareness among institution, the medical

community and the public on the importance of

Spina Bifida prevention, but also on the possibilities

of care and advisory for Spina Bifida patients and

their families.

Every year, the Week’s programme is laden with new

initiatives and includes communication and

awareness‐raising activities, besides seminars,

scientific meetings, and family‐centred activities.

Partnership and networking:The COOP campaign for Spina Bifida prevention

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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 dayorganized in Coop malls and shopping centresnationwide.

Partnership and networking:The Spina Bifida Prevention Month

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In May ASBI Onlus has organized the first edition of the “Spina Bifida Prevention Month”, an important moment to raise‐awareness and inform about Spina Bifida prevention in Italy. 

The goals:

• Informing and raising awareness of the

middle class

• Informing women on Spina Bifida prevention

• Involving the institutions

The prevention month completes the activities held during the National Spina Bifida Week

Partnership and networking:The Cagliari Conference

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In May 2011, during the Spina Bifida Prevention Month promoted by ASBI Onlus, the SardinianSpina Bifida Association organized a National Conference on primary prevention. 

In Sardinia, over 300 children are born with 

congenital malformations every year 

Partnership and networking:Primary prevention in schools

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The “Proteggi tuo figlio prima che nasca” (protect your son before birth) project is an initiativedesigned three years ago thanks to the support of the Rotary International ‐ Gruppo Po, andserves the goal of promoting congenital malformation prevention, including Spina Bifida, bymeans of meetings with female high school students.

How important was Rotary’s involvement inthis campaign?

Over this first year of activities wemet about500 students who were informed andbriefed about the correct diet to avoid anypathologies due to the improper closure ofthe neural tube and consequently we alsoreached out to the same number of families,who should be added to the other contactswe made through the media and presscoverage.

• Technical partnership• Financial partnership•Networking• Institutional patronage•Media patronage

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•Communication•Events•Press office•Corporate fundraising

National Healthcare System

National Spina Bifida Association Coordination

Trade associations

Companies

It is very important to consider all criticalitieswhich may affect the campaign success as soon as they emerge

Partnership and networking:from the agency

Media

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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THANKS FOR YOUR ATTENTION!

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