executive workshop          Making our network stronger        Raising awareness on prevention  Partnerships and networkin...
The Italian scenario:   Associazione Spina Bifida Italia ASBI Onlus ‐ Associazione Spina Bifida Italia – is the no‐profit ...
The Italian scenario:   Coordinamento Nazionale Associazioni Spina Bifida The Coordinamento Nazionale delle Associazioni S...
The Italian scenario:     Network Italiano Promozione Acido FolicoThe ASBI and Coordinamento are members of the Network It...
The Italian scenario:  The ASBI partner networkOver the years the Association has developed a network of national and inte...
Spina Bifida and the prevention campaignsSpina Bifida is the most common malformation affecting the Central Nervous System...
Spina Bifida and the prevention campaignsWe are all fully aware of how important and effective prevention is.Primary preve...
The prevention campaigns:Partnership and networking development               Primary prevention CAMPAIGNS                ...
Partnership and networking:  The National Spina Bifida WeekFor 2011 ASBI Onlus and Coordinamento are promoting the eight e...
Partnership and networking:  The COOP campaign for Spina Bifida preventionIn May 2009 ASBI and Coop set out on a joint pro...
Partnership and networking:  The Spina Bifida Prevention MonthIn May ASBI Onlus has organized the first edition of the “Sp...
Partnership and networking:  The Cagliari ConferenceIn May 2011, during the Spina Bifida Prevention Month promoted by ASBI...
Partnership and networking:  Primary prevention in schoolsThe “Proteggi tuo figlio prima che nasca” (protect your son befo...
Partnership and networking:  from the agency• Technical partnership• Financial partnership• Networking• Institutional patr...
Partnership and networking: Conclusions                     Many efforts and commitments required                    Human...
THANKS FOR YOUR ATTENTION!                             16
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Asbi 28.6.2011

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Asbi 28.6.2011

  1. 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. OnlusMario Orgiana – President A.S.B.I. Sardegna Onlus 28th June 2011 Brussels
  2. 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 2
  3. 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 3
  4. 4. The Italian scenario: Network Italiano Promozione Acido FolicoThe 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 4
  5. 5. The Italian scenario: The ASBI partner networkOver 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. THIRD SECTORHEALTHCARE COMPANIES INSTITUTIONS MEDIA 5
  6. 6. Spina Bifida and the prevention campaignsSpina 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%. 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.  6
  7. 7. Spina Bifida and the prevention campaignsWe 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%. 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. 7
  8. 8. The prevention campaigns:Partnership and networking development Primary prevention CAMPAIGNS GOALS TARGET RESOURCES > NEEDS NETWORKING PARTNERSHIP  Criticalities COMPANIES THIRD HEALTHCARE SECTOR MEDIA INSTRUCTIONS 8
  9. 9. Partnership and networking: The National Spina Bifida WeekFor 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. 9
  10. 10. Partnership and networking: The COOP campaign for Spina Bifida preventionIn May 2009 ASBI and Coop set out on a joint project aimed at raising awareness nationwide interms of Spina bifida prevention, entitled “Io non concepisco una vita senza acido folico” (Lifewithout 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. 10
  11. 11. Partnership and networking: The Spina Bifida Prevention MonthIn 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 institutionsThe prevention month completes the activities held during the National Spina Bifida Week 11
  12. 12. Partnership and networking: The Cagliari ConferenceIn 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  12
  13. 13. Partnership and networking: Primary prevention in schoolsThe “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 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. 13
  14. 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 CoordinationIt is very important to consider all criticalities which may affect the campaign success as soon as they emerge 14
  15. 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 dayIt 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 15
  16. 16. THANKS FOR YOUR ATTENTION! 16

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