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IF’s mission over the world in 2013. PREVENTION AND CARE OF SPINA BIFIDA

Pierre Mertens 2013

Izmir 29th of June

What is IF?  Mission  the mission of IF is to decrease the incidence of Spina Bifida and Hydrocephalus by primary prevention and to improve the quality of life of those affected.

 Network of association of persons with SB&H and their families  Domains    

Human Rights CRPD (access to care/access to life) Prevention (Primary Prevention) International Solidarity Network Development

What is IF?  IF represents people with Spina Bifida and Hydrocephalus  One of 7 “Key EU networks” of people with disabilities for the European Commission  Consultative status at the UN (ECOSOC)  Participatory status at the Council of Europe  Active in partnerships with FFI, WHO, CDC, Unicef, EUROCAT, Eurodis and others  Full member of EDF.  Membership IDA pending  Fortification-project (training, advocacy) with Akzo, HKI and FFI  MOU with CDPF in China 


Improve the quality of Life - Medical progress -

Continence management (CIC) ETV/CPC versus shunting Multidisciplinary approach

Outcome of newborns has never been as good as today

- New challenges: -

Multidisciplinary care for adults with SB Aging people with SB&H Access to care in LMIE Negative stereotypes on SB&H Prenatal selection and loss of expertise

Coordinated care for adults

Adults with SB&H - Transition towards adulthood - Workshop 窶連dults and now? Paper on ageing

Position Paper on Ageing

Access to care and treatment

Situation without treatment

Situation without treatment

Situation without treatment

Negative Cycle

Institutionalization Termination of pregnancy / life Unmotivated professionals and parents

Situation in Africa

Positive Cycle

Motivated parents and professionals Timely referral / improved outcome Inclusion in society

Prenatal screening and termination of pregnancies

Right for full and balanced information

Groningen Protocol & Euthansia in New Borns

Prevention is the catchword in medicine today

IF at the European Health Forum

IF has a good and strong story IF promotes primary Prevention and fights for the quality of life for children and adults with spina Bifida

Primary Prevention in developing countries and access to treatment and care,through IF’s solidarity programme

IF projects in East-Africa Khartoum, Sudan Mbarara, Kampala, Gulu, Mbale, Uganda Kijabe, Kenya Dar es Salaam, Arusha, Moshi, Tanzania Lusaka, Zambia Blantyre, Malawi Medical material, training, etc. to many more countries (RDC, Ethiopia, Somalia ‌)

But also projects in Peru, Vietnam and China and networking in Latin America

Parent groups

Parents take over

Involving the target group… you will see the barriers to treatment LMIE Lack of information on available treatment Access to available treatment (poverty) Negative stereotypes on SB (referrals)` Ineffective state hospitals Unaffordable private medicine …/…

Barriers in access to care Distances: create a network of CBR projects and out-reach clinics Money: Use cheap material and doing less but better. Doing only what improves the QOL. Every additional step in care can be a fatal barrier Empower parent groups to achieve public health insurance Referrals: fighting stereotypes to get professionals motivated. Financial support for travel Guest house near referral hospitals Parent groups fighting the the rights of their kids

Continence management program Top medicine with CIC and bowel wash-out No expensive urodynamics. Parents train parents.

Continence management

Access to care, reduce costs

Cheap shunts

Reduce costs and avoid unneeded medical imaging

Access to care

Innovative surgical techniques

Distance: Guest house in Kijabe and travel fees

SHIP Spina Bifida and Hydrocephalus Interdisciplinary Programme Good

cooperation with all stakeholders Communication through SHIP passport Shared protocols Controlled information in training-programs and training material User participation at all levels Who is the captain?,

Parental Hope!

Fighting one sided negative stereotypes on SB&H

Olga, psychologe & doctor (NL)

Vicky lawyer 2 kids (Guatemala)

Margo peadiatrician ( Scotland)

Jeffrey conductor (UK)

Guro, politician (N)

Francesca Co-Worker and mother

China where everything is available

But only 18% of children with SB survive the first year of age

Asia -Vietnam SB workshop at ASCON China -CRRC starts a SB&H unit -Put SB&H on the agenda on the China Rehabilitation forum -CDPF and IF MoU -Liaison person in Beijing

Latin America:  Networking Latin American countries  First Latin American meeting in August 2013  Conference in Buonos Aeres  Liaison person In Buoanos Aeres

 Africa:  Office in Kampala (Uganda)  Yearly African Workshop  Cure Hydrocephalus program  International Solidarity program

Research: -Cooperation with research society -Linking up with Bo Hjelt Foundation -Yearly SBA scientific conference Innovative techniques -fetal surgery -nerve transplants -ETV/CPC -Research on causes -Etc‌

SB&H and the Millennium Development goals Preconception care, preventative measures

Access to health care Inclusion in society, follow (capacity) up care

Registration at birth

Registration later

To achieve our mission we need to ‘Unite and Share’ and become a movement of all people involved

People United Spina bifida Hydrocephalus Or PUSH for a better life of people with Spina Bifida Worlds wide Join the club!!!

Thank you

IF’s mission over the world in 2013 by Pierre Mertens  
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