SlideShare ist ein Scribd-Unternehmen logo
1 von 17
Primary prevention of NTD's and IF ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
an obvious gap in the skin covering the spine,  the vertebrae and the nervous  system are damaged,  leading to some degree of paralysis
 
IF network of knowledge on SB&H ,[object Object],[object Object],[object Object],[object Object],[object Object]
IF ' s Mission ,[object Object],[object Object]
Human rights ,[object Object],[object Object],[object Object],[object Object],[object Object]
International Solidarity
Network development
Spina Bifida became a rare disease ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Primary Prevention With Folic Acid  the same child  is born without a disability! A daily intake of 0.4 mg of Folic Acid, at least two months prior to the conception and during the first months of pregnancy   The IF- network of people with Spina Bifida took the lead in primary prevention
IF advocates for mandatory fortification of staple food with Folic Acid and started a European Awareness campaign.
What do we want? ,[object Object],[object Object],27 January 2010 European Parliament, Brussels
Folic Acid prevention in Europe ,[object Object],[object Object],[object Object],[object Object],[object Object]
[object Object]
Cooperation of IF & Bayer assures  ,[object Object],[object Object],[object Object],[object Object]
prevention should be part of the rare disease action plans ,[object Object],[object Object]
Thank you www.ifglobal.org

Weitere ähnliche Inhalte

Was ist angesagt?

How to raise interest in medicines development: Results from Workgroup 1
How to raise interest in medicines development: Results from Workgroup 1How to raise interest in medicines development: Results from Workgroup 1
How to raise interest in medicines development: Results from Workgroup 1
Nowgen
 

Was ist angesagt? (20)

Workshop 5 - "Presentation of Social Challenges of RD patients in the Joint A...
Workshop 5 - "Presentation of Social Challenges of RD patients in the Joint A...Workshop 5 - "Presentation of Social Challenges of RD patients in the Joint A...
Workshop 5 - "Presentation of Social Challenges of RD patients in the Joint A...
 
Workshop 6 - "BURQOL-RD"
Workshop 6 - "BURQOL-RD"Workshop 6 - "BURQOL-RD"
Workshop 6 - "BURQOL-RD"
 
Workshop 3 - "Feedback from the 15 National Conferences on Registries"
Workshop 3 - "Feedback from the 15 National Conferences on Registries" Workshop 3 - "Feedback from the 15 National Conferences on Registries"
Workshop 3 - "Feedback from the 15 National Conferences on Registries"
 
Conference 4 - The patient experience in the development and implementation ...
Conference 4 - The patient experience  in the development and implementation ...Conference 4 - The patient experience  in the development and implementation ...
Conference 4 - The patient experience in the development and implementation ...
 
Workshop 2 - "Presentation of the concept, definitions and terminology"
Workshop 2  - "Presentation of the concept, definitions and terminology" Workshop 2  - "Presentation of the concept, definitions and terminology"
Workshop 2 - "Presentation of the concept, definitions and terminology"
 
Workshop 6 - "Sharing expertise: transfer of experience from patient organiza...
Workshop 6 - "Sharing expertise: transfer of experience from patient organiza...Workshop 6 - "Sharing expertise: transfer of experience from patient organiza...
Workshop 6 - "Sharing expertise: transfer of experience from patient organiza...
 
Conference 1 - EURORDIS’ recommendations for National Plans, Yann le Cam, EUR...
Conference 1 - EURORDIS’ recommendations for National Plans, Yann le Cam, EUR...Conference 1 - EURORDIS’ recommendations for National Plans, Yann le Cam, EUR...
Conference 1 - EURORDIS’ recommendations for National Plans, Yann le Cam, EUR...
 
Workshop 1 - "The EU tender on Newborn Screening for rare disordersin Europe"
Workshop 1 - "The EU tender on Newborn Screening for rare disordersin Europe" Workshop 1 - "The EU tender on Newborn Screening for rare disordersin Europe"
Workshop 1 - "The EU tender on Newborn Screening for rare disordersin Europe"
 
Workshop 5 - "Feedback from the 15 National Conferences on social aspects"
Workshop 5 - "Feedback from the 15 National Conferences on social aspects"Workshop 5 - "Feedback from the 15 National Conferences on social aspects"
Workshop 5 - "Feedback from the 15 National Conferences on social aspects"
 
EUPATI’s framework on Informing the “health-interested” public about medicine...
EUPATI’s framework on Informing the “health-interested” public about medicine...EUPATI’s framework on Informing the “health-interested” public about medicine...
EUPATI’s framework on Informing the “health-interested” public about medicine...
 
Workshop 2- "Feedback from the 15 National Conferences on Centres of Expertise"
Workshop 2- "Feedback from the 15 National Conferences on Centres of Expertise"Workshop 2- "Feedback from the 15 National Conferences on Centres of Expertise"
Workshop 2- "Feedback from the 15 National Conferences on Centres of Expertise"
 
How to raise interest in medicines development: Results from Workgroup 1
How to raise interest in medicines development: Results from Workgroup 1How to raise interest in medicines development: Results from Workgroup 1
How to raise interest in medicines development: Results from Workgroup 1
 
Workshop 3 - "Presentation of the concept, definitions and terminology"
Workshop 3 - "Presentation of the concept, definitions and terminology"Workshop 3 - "Presentation of the concept, definitions and terminology"
Workshop 3 - "Presentation of the concept, definitions and terminology"
 
Reaching a public audience on medicines development: Anna Zawada
Reaching a public audience on medicines development: Anna ZawadaReaching a public audience on medicines development: Anna Zawada
Reaching a public audience on medicines development: Anna Zawada
 
Introduction to the breakout sessions & case studies presentations
Introduction to the breakout sessions & case studies presentationsIntroduction to the breakout sessions & case studies presentations
Introduction to the breakout sessions & case studies presentations
 
Patient empowerment at EU level - Katja Neubauer
Patient empowerment at EU level - Katja NeubauerPatient empowerment at EU level - Katja Neubauer
Patient empowerment at EU level - Katja Neubauer
 
Tailoring immunization programmes in Bulgaria
Tailoring immunization programmes in Bulgaria Tailoring immunization programmes in Bulgaria
Tailoring immunization programmes in Bulgaria
 
Childhood Disability - Hans Forssberg
Childhood Disability - Hans ForssbergChildhood Disability - Hans Forssberg
Childhood Disability - Hans Forssberg
 
Destitute Roma & access to healthcare
Destitute Roma & access to healthcareDestitute Roma & access to healthcare
Destitute Roma & access to healthcare
 
Sandra Liede: The Finnish Genome Strategy and the Genome Law
Sandra Liede: The Finnish Genome Strategy and the Genome LawSandra Liede: The Finnish Genome Strategy and the Genome Law
Sandra Liede: The Finnish Genome Strategy and the Genome Law
 

Ähnlich wie Workshop 7 - "Presentation of the International Federation for Spina Bifida and Hydrocephalus’ primary prevention study"

Lunch session w christie
Lunch session w christieLunch session w christie
Lunch session w christie
Asszisztencia
 
Polish presidency priorities presentation
Polish presidency priorities presentationPolish presidency priorities presentation
Polish presidency priorities presentation
Asszisztencia
 
diarrhoea: why children are still dying & what can be done
diarrhoea: why children are still dying & what can be donediarrhoea: why children are still dying & what can be done
diarrhoea: why children are still dying & what can be done
Chynthya Riiweuh
 
A CALL FOR ACTION TO STRENGTHEN HEALTHCARE FOR HEARING LOSS
A CALL FOR ACTION TO STRENGTHEN HEALTHCARE FOR HEARING LOSSA CALL FOR ACTION TO STRENGTHEN HEALTHCARE FOR HEARING LOSS
A CALL FOR ACTION TO STRENGTHEN HEALTHCARE FOR HEARING LOSS
Jimena Kerszenblat
 

Ähnlich wie Workshop 7 - "Presentation of the International Federation for Spina Bifida and Hydrocephalus’ primary prevention study" (20)

Labelling, a legal obligation with positive impact 7th sept 2011
Labelling, a legal obligation with positive impact 7th sept 2011Labelling, a legal obligation with positive impact 7th sept 2011
Labelling, a legal obligation with positive impact 7th sept 2011
 
Lunch session w christie
Lunch session w christieLunch session w christie
Lunch session w christie
 
Mary O'Mahony 'The Perspectives on FASD from Souther Ireland'
Mary O'Mahony 'The Perspectives on FASD from Souther Ireland'Mary O'Mahony 'The Perspectives on FASD from Souther Ireland'
Mary O'Mahony 'The Perspectives on FASD from Souther Ireland'
 
Polish presidency priorities presentation
Polish presidency priorities presentationPolish presidency priorities presentation
Polish presidency priorities presentation
 
Enrichment of bakery products in iodides part 2
Enrichment of bakery products in iodides   part 2Enrichment of bakery products in iodides   part 2
Enrichment of bakery products in iodides part 2
 
diarrhoea: why children are still dying & what can be done
diarrhoea: why children are still dying & what can be donediarrhoea: why children are still dying & what can be done
diarrhoea: why children are still dying & what can be done
 
RE(ACT) Community: a platform for the #RAREvolution
RE(ACT) Community: a platform for the #RAREvolutionRE(ACT) Community: a platform for the #RAREvolution
RE(ACT) Community: a platform for the #RAREvolution
 
Press release. Policy Audit Fertility
Press release. Policy Audit Fertility Press release. Policy Audit Fertility
Press release. Policy Audit Fertility
 
Miracle Book - Prague 2014
Miracle Book - Prague 2014Miracle Book - Prague 2014
Miracle Book - Prague 2014
 
Childhood lead poisoning(articulo-embrio)
Childhood lead poisoning(articulo-embrio)Childhood lead poisoning(articulo-embrio)
Childhood lead poisoning(articulo-embrio)
 
Childhood Lead Poisoning(articulo embrio)
Childhood Lead Poisoning(articulo embrio)Childhood Lead Poisoning(articulo embrio)
Childhood Lead Poisoning(articulo embrio)
 
ORT.pptx
ORT.pptxORT.pptx
ORT.pptx
 
Immunisation in a digital world - Futures Workshop
Immunisation in a digital world - Futures WorkshopImmunisation in a digital world - Futures Workshop
Immunisation in a digital world - Futures Workshop
 
European Policy Audit on Fertility
European Policy Audit on Fertility European Policy Audit on Fertility
European Policy Audit on Fertility
 
EPAF final
EPAF finalEPAF final
EPAF final
 
Topo: Aging population and AmI
Topo: Aging population and AmITopo: Aging population and AmI
Topo: Aging population and AmI
 
Markku Peltonen: THL in public health promotion then and now
Markku Peltonen: THL in public health promotion then and nowMarkku Peltonen: THL in public health promotion then and now
Markku Peltonen: THL in public health promotion then and now
 
EFW2021 roundtable presentation
EFW2021 roundtable presentationEFW2021 roundtable presentation
EFW2021 roundtable presentation
 
A CALL FOR ACTION TO STRENGTHEN HEALTHCARE FOR HEARING LOSS
A CALL FOR ACTION TO STRENGTHEN HEALTHCARE FOR HEARING LOSSA CALL FOR ACTION TO STRENGTHEN HEALTHCARE FOR HEARING LOSS
A CALL FOR ACTION TO STRENGTHEN HEALTHCARE FOR HEARING LOSS
 
Unicef
UnicefUnicef
Unicef
 

Mehr von EURORDIS - Rare Diseases Europe

RareConnect.org - Connecting Rare Disease Patients Globally
RareConnect.org - Connecting Rare Disease Patients GloballyRareConnect.org - Connecting Rare Disease Patients Globally
RareConnect.org - Connecting Rare Disease Patients Globally
EURORDIS - Rare Diseases Europe
 
Results of a survey on the role of Patient Groups in Research and their prio...
Results of a survey on the role of Patient Groups in Research and their prio...Results of a survey on the role of Patient Groups in Research and their prio...
Results of a survey on the role of Patient Groups in Research and their prio...
EURORDIS - Rare Diseases Europe
 

Mehr von EURORDIS - Rare Diseases Europe (20)

RareConnect.org webinar How to use Twitter to build your online rare disease ...
RareConnect.org webinar How to use Twitter to build your online rare disease ...RareConnect.org webinar How to use Twitter to build your online rare disease ...
RareConnect.org webinar How to use Twitter to build your online rare disease ...
 
RareConnect.org Update 2016
RareConnect.org Update 2016RareConnect.org Update 2016
RareConnect.org Update 2016
 
RareConnect.org webinar: How to start an awareness day for your rare disease
RareConnect.org webinar: How to start an awareness day for your rare diseaseRareConnect.org webinar: How to start an awareness day for your rare disease
RareConnect.org webinar: How to start an awareness day for your rare disease
 
Living with TRAPS poll results
Living with TRAPS poll resultsLiving with TRAPS poll results
Living with TRAPS poll results
 
Pitt Hopkins syndrome community on RareConnect.org
Pitt Hopkins syndrome community on RareConnect.orgPitt Hopkins syndrome community on RareConnect.org
Pitt Hopkins syndrome community on RareConnect.org
 
The Value of Online Communities
The Value of Online CommunitiesThe Value of Online Communities
The Value of Online Communities
 
Updates to RareConnect.org in 2014
Updates to RareConnect.org in 2014Updates to RareConnect.org in 2014
Updates to RareConnect.org in 2014
 
Update on the Mysasthenia Gravis community on RareConnect.org
Update on the Mysasthenia Gravis community on RareConnect.orgUpdate on the Mysasthenia Gravis community on RareConnect.org
Update on the Mysasthenia Gravis community on RareConnect.org
 
Surveys and polls: The RareConnect.org Experience
Surveys and polls: The RareConnect.org ExperienceSurveys and polls: The RareConnect.org Experience
Surveys and polls: The RareConnect.org Experience
 
RareConnect.org - Connecting Rare Disease Patients Globally
RareConnect.org - Connecting Rare Disease Patients GloballyRareConnect.org - Connecting Rare Disease Patients Globally
RareConnect.org - Connecting Rare Disease Patients Globally
 
Rare disease day 2011 highlights
Rare disease day 2011 highlightsRare disease day 2011 highlights
Rare disease day 2011 highlights
 
Results of Survey on the role of Patient Groups in Research and their priorit...
Results of Survey on the role of Patient Groups in Research and their priorit...Results of Survey on the role of Patient Groups in Research and their priorit...
Results of Survey on the role of Patient Groups in Research and their priorit...
 
Results of Survey on the role of Patient Groups in Research and their priorit...
Results of Survey on the role of Patient Groups in Research and their priorit...Results of Survey on the role of Patient Groups in Research and their priorit...
Results of Survey on the role of Patient Groups in Research and their priorit...
 
Results of a survey on the role of Patient Groups in Research and their prio...
Results of a survey on the role of Patient Groups in Research and their prio...Results of a survey on the role of Patient Groups in Research and their prio...
Results of a survey on the role of Patient Groups in Research and their prio...
 
Conference 3 "Outcomes of 15 National Conferences, "
Conference 3   "Outcomes of 15 National Conferences, "Conference 3   "Outcomes of 15 National Conferences, "
Conference 3 "Outcomes of 15 National Conferences, "
 
Workshop 3 - "Outcome of the RD Task Force and EPPOSI Workshop"
Workshop 3 - "Outcome of the RD Task Force and EPPOSI Workshop"Workshop 3 - "Outcome of the RD Task Force and EPPOSI Workshop"
Workshop 3 - "Outcome of the RD Task Force and EPPOSI Workshop"
 
Conference 5 - “Patient’s Experience in the Development and Implementation of...
Conference 5 - “Patient’s Experience in the Development and Implementation of...Conference 5 - “Patient’s Experience in the Development and Implementation of...
Conference 5 - “Patient’s Experience in the Development and Implementation of...
 
Workshop 3 - "Presentation of the Epi-Rare project"
Workshop 3 - "Presentation of the Epi-Rare project"Workshop 3 - "Presentation of the Epi-Rare project"
Workshop 3 - "Presentation of the Epi-Rare project"
 
Workshop 2 - "EURORDIS Policy recommendations based on EURORDIS Declaration, ...
Workshop 2 - "EURORDIS Policy recommendations based on EURORDIS Declaration, ...Workshop 2 - "EURORDIS Policy recommendations based on EURORDIS Declaration, ...
Workshop 2 - "EURORDIS Policy recommendations based on EURORDIS Declaration, ...
 
Workshop 3 - "Outcome of the RD Task Force and EPPOSI Workshop on registries"
Workshop 3 - "Outcome of the RD Task Force and EPPOSI Workshop on registries"Workshop 3 - "Outcome of the RD Task Force and EPPOSI Workshop on registries"
Workshop 3 - "Outcome of the RD Task Force and EPPOSI Workshop on registries"
 

Workshop 7 - "Presentation of the International Federation for Spina Bifida and Hydrocephalus’ primary prevention study"

  • 1.
  • 2. an obvious gap in the skin covering the spine, the vertebrae and the nervous system are damaged, leading to some degree of paralysis
  • 3.  
  • 4.
  • 5.
  • 6.
  • 9.
  • 10. Primary Prevention With Folic Acid the same child is born without a disability! A daily intake of 0.4 mg of Folic Acid, at least two months prior to the conception and during the first months of pregnancy The IF- network of people with Spina Bifida took the lead in primary prevention
  • 11. IF advocates for mandatory fortification of staple food with Folic Acid and started a European Awareness campaign.
  • 12.
  • 13.
  • 14.
  • 15.
  • 16.