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Public Consultation regarding a European Action in the Field of Rare Diseases

European members of the FFI share their insights with the EC The European Commission (EC) plans to publish in November 2008 a Communication on a European Action in the Field of Rare Diseases. This communication will be the culmination of a process that started with a public consultation aiming at gathering expertise in all Member States. Following the publication of this EC stakeholder consultation on 27 November 2007, IF requested input from all European members of the Flour Fortification Initiative (FFI). Their contributions were gathered in a coordinated response that IF recently send to the EC. The response can be read here.

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22/05/2009 MedConference 2009: Why do We Care for Others? 4/05/2009 European elections and independent living 4/05/2009 Successful campaign in Izmir, Turkey 29/04/2009 Incontinence Coalition Canada 21/04/2009 Smurf genes help cells to their proper destination 21/04/2009 Facing fears to raise funds 14/04/2009 Kyrgyzstan approves legislation requiring flour fortification 14/04/2009 Prevention campaign in India has a great start 13/04/2009 "Bolzplatz" - Featuring Lucas Drobek 10/04/2009 Wilhelm Langenhorst retires from ASBH 10/04/2009 Adaptive sports to improve quality of life 3/04/2009 European Commission calls for proposals to combat discrimination 1/04/2009 Postnatal management and outcome for neural tube defects 31/03/2009 Lectures about quality of life at EncuentroMadrid 2009 3/04/2009 One step closer towards non-discrimination outside the labour market 19/04/2009 Vacancy at IF 14/04/2009 African Workshop Digital Storytelling 24/03/2009 Fetal therapy in the Netherlands 22/03/2009 Scientific SBA award for Dr Benjamin Warf 27/03/2009 ASBAH's Chief Executive Andrew Russell retires 16/03/2009 IF meeting with members of the European Commission 22/03/2009 Launch Neural Tube Defects prevention programme in India 3/04/2009 Parental care in the Middle Pleistocene 19/03/2009 Novel research shows vitamin supplement could prevent Hydrocephalus 17/03/2009 Contest "Definitely Inclusive" 16/03/2009 Kaitlin Clutter - Champion Across America 13/03/2009 Report of the Implementation Group on Folic Acid Food Fortification to the Department of Health and Children 6/03/2009 Low vitamin levels could raise risk of Spina Bifida 6/03/2009 Mediterranean diet seems to reduce the risk of spina bifida 16/03/2009 Spina Bifida Support Group of Mumbai's get-together 6/03/2009 European legislation to protect against discrimination 4/03/2009 IF and Latin America 4/03/2009 IF workshop Prague, Czech Republic 1/04/2009 Reminder - SBHI is looking for volunteers and staff 2/04/2009 Parental care in the Middle Pleistocene 2/03/2009 Specific risks 2/03/2009 European Elections 2009 - Call for action 17/02/2009 Looking for volunteers and staff 16/02/2009 Nutrition and lifestyle recommendations are ignored 13/02/2009 Parliamentary Assembly adopts resolution 17/02/2009 Escaping Alcatraz, fighting Hydrocephalus 5/03/2009 Liliane (Lieke) Brekelmans-Gronert 13/02/2009 Spina Bifida Support Group of Mumbai's get-together 11/02/2009 Slovak study visit to University Hospital Leuven 4/02/2009 Hope for Dar es Salaam 9/02/2009 Cooperation in Africa rewarded with Schokland Fund grant 9/02/2009 Successful prenatal surgery in Italy 22/01/2009 Paid Traineeships for people with disabilities 9/02/2009 Disability and quality of life 9/02/2009 New office Tanzanian parent group 22/01/2009 EDF Manifesto and the European elections 2009 30/01/2009 Promoting the human rights of people with disabilities 30/01/2009 Towards better care and quality of life 2/12/2008 March 2009 - First SBA World Congress of Spina Bifida Research and Care 22/01/2009 Towards prevention and a better quality of life in Eastern Europe 19/01/2009 No goal too high 19/01/2009 Prevention campaign in Italy 15/01/2009 IF present at important meeting about the neurogenic bladder 15/01/2009 An exemplary rehabilitation centre for children with special needs in Bulgaria 11/01/2009 Important leadership changes for people with a disability 5/01/2009 National Folic Acid Week in the USA 5/01/2009 The Estonian Christmas Sun Project 5/01/2009 Optional Protocol to the International Covenant on Economic, Social and Cultural Rights 5/01/2009 Bas Treffers (1944 - 2008) 2/01/2009 Princess Astrid receives "End Malaria Award 2008" 22/12/2008 Holy See finds UN convention fundamentally faulty 22/12/2008 An interactive e-book for children with Spina Bifida and Hydrocephalus 22/12/2008 AEBH – Associação de Espinha Bífida e Hidrocefalia do Rio de Janeiro 11/12/2008 Spina Bifida - Management and Outcome 8/12/2008 European Commissioner Vladimir Spidla and IF 8/12/2008 Looking back on IF's 30th anniversary dinner 7/12/2008 IF's 30th anniversary dinner 3/12/2008 The Importance of Values, Religion and Faith in the work with people with disabilities 8/12/2008 Scientific illustrations on Clean Intermittent Catheterisation 7/12/2008 Participate in research into the quality of life of people with Normal Pressure Hydrocephalus 6/11/2008 New study about the treatment of Hydrocephalus in Africa 28/11/2008 Flour Fortification Initiative Awards 28/11/2008 First African Flour Fortification Workshop 27/11/2008 Inclusive education in Zanzibar 27/11/2008 CCBRT and the Parent Group of Moshi 26/11/2008 First words on Parental Hope 30/10/2008 Future plans for the iPATH program 24/11/2008 Images from the IF African Workshop 2008 24/11/2008 Conference about the nursing profession 24/11/2008 IF visit to the Nairobi Parent Group 24/11/2008 Conference on disability in Milan, Italy 5/11/2008 Share knowledge about Folic Acid around the world 5/11/2008 Introducing Renée Jopp 8/03/2008 World Congress on Spina Bifida Research and Care 6/11/2008 Special diner to celebrate IF's 30th anniversary 4/11/2008 IF welcomes it's 35th member Romania 3/11/2008 The Gordon Ramsay Appeal 2/11/2008 Europe goes inclusive 2/11/2008 Next steps towards wheat flour fortification 12/11/2007 Join the IF international ListServ 3/11/2008 First ever Conference on Social Development in Africa 30/10/2008 ASBI launches awareness campaign for Spina Bifida 19/10/2008 Olivia Nakato reports on the 4th International WILD workshop 15/10/2008 Rita Bekqeli wins prize in DokuKids 14/10/2008 Slovakia's Veronika Vadovicova wins Paralympics first gold 4/10/2008 Dr. Ben Warf at the 2008 ISPN Meeting 3/09/2008 African Workshop 2008 2/10/2008 Pan Arab Journal of Neurosurgery: Special Supplement on Peadiatric Neurosurgery 6/10/2008 Climb for Cure! 22/09/2008 Summer Independence Training Project 22/09/2008 Adult events SBA well attended 22/09/2008 To live different weekdays 11/09/2008 Me Hyvat's peer support groups 16/09/2008 Launch of new website for ANED 22/09/2008 IASBAH celebrates their 40th Anniversary 24/09/2008 Adriana Tontsch puts children with Spina Bifida and and Hydrocephalus on the Romanian agenda 3/09/2008 Medicina e Persona Rimini Meeting 2008 4/09/2008 Registration of IF Child Help in Uganda 3/09/2008 Update Toolkit on Flour Fortification 3/09/2008 Quality of life for families with spina bifida in Kenya 3/09/2008 IF present at MIUSA's workshop 4/08/2008 MEP Johan Van Hecke visits IF project 16/06/2008 Benefits of flour fortification in South Africa 11/06/2008 First ETV operation at Hue Hospital, Vietnam 3/09/2008 Live webcast robotically-assisted ureteral reimplantation 22/06/2008 PACER Center - Champions for children with disabilities 11/06/2008 IF Award 2008 for Dr Rob de Jong 22/06/2008 SBA conference "Building a brighter tomorrow" 26/05/2008 Putting words into action 2/06/2008 Endoscope installation in Vietnam 5/06/2008 Visting the Mukisa Foundation 29/05/2008 Conference "Accanto alla vita. Nel mondo" in Italy 28/05/2008 Clinic day at Katalemwa Cheshire Home, Uganda 30/06/2008 Looking back on IF's 19th International Conference 5/06/2008 Blog about the 19th IF World Conference 7/04/2008 Beauty inside and out 4/04/2008 NZ disability group awarded US$50,000 grant 29/03/2008 Folate intake linked to lower rates of abnormalities in sperm 31/03/2008 Congratulations to Olga de Wit 14/03/2008 Free treatment for Hydrocephalus 12/02/2008 IF visit to the Ugandan Parliament 11/02/2008 IF Child Help opens office in Kampala 11/02/2008 Introducing Olivia Nakato and Rebecca Nakitto 3/03/2008 Public Consultation regarding a European Action in the Field of Rare Diseases 2/03/2008 Recommendation to the Dutch Government to add Folic Acid in breakfast cereals and bread products 8/03/2008 MIUSA's 4th International Women's Institute on Leadership and Disability 2/03/2008 Rising above the limitations of a birth defect 17/01/2008 Groningen Protocol countered by colleagues in the Netherlands 16/01/2008 Conference 2008 - "Drawing smiles - towards adulthood" 21/01/2008 International criticism on Groningen Protocol 18/01/2008 IF obtained an important EU grant 18/01/2008 “Europe should be leading the world, not following it” 17/01/2008 Update on Overall Prevalence of Major Birth Defects 18/01/2008 IF present at important prevention meeting in Geneva 12/11/2007 IF and FFI host productive European meeting on mandatory fortification 14/01/2008 IPATH training started 16/01/2008 Creating awareness about Spina Bifida in India 16/01/2008 Do not run away 16/01/2008 Inspiring words from Dr. Antony 29/12/2007 Spina Bifida in 2008 2/11/2007 Hope for Zambian parents 21/09/2007 UN Convention on the Rights of Persons with a Disability 2/11/2007 Policy visits in Uganda 5/11/2007 Successful exchange between Slovakia, Romania and IF 14/12/2007 Traineeship opportunity at EDF 13/11/2007 Successful 1Million4Disability Campaign 5/11/2007 Success stories in Malawi 2/11/2007 New Zambian CURE Hospital fully operative 2/11/2007 Cooperation at all levels 17/10/2007 Children with SBH face great challenges in Angola 16/10/2007 Dr Warf represents IF at scientific conferences 20/09/2007 Vietnamese I-PATH trainees in Mbale, January 2008 2/10/2007 The Stockholm Declaration - Workability International 5/09/2007 BOSK and ASBH donate for Africa 5/09/2007 2006 Activity Report online 17/08/2007 IF participates in Rimini Meeting 2007 4/09/2007 South-South exchange Kenya-Zambia 19/09/2007 Increased awareness about prevention in China 18/09/2007 EUtube: "For Diversity. Against Discrimination." 5/09/2007 Join the massive EDF gathering 1million4disability 18/09/2007 Pre-announcement International Conference DCDD 16/07/2007 Invitation 3rd International Smiling Child Festival 16/07/2007 ETV training in Pakistan 16/07/2007 Personal account IF board member Renée Höglin 7/05/2006 IF Child Help 16/07/2007 Successful IF conference in Kampala, Uganda 16/07/2007 IF Award 2007 16/07/2007 Keynote speech urges Commonwealth to take action 16/07/2007 Pierre and Maarten Mertens visiting projects in East-Africa 16/07/2007 Adult Meeting in Kampala 30/08/2007 UN Convention on the Rights of Persons with a Disability 11/05/2007 Portuguese weblog about Spina Bifida 9/05/2007 Risk factors for pressure sores in adult patients with myelomeningocele 5/04/2007 Training staff orphanage in Vietnam 9/05/2007 5th International NTD Conference 5/04/2007 IF training visit in Vietnam 5/05/2007 Second training at Go Vap orphanage 24/04/2007 European Conference MDGs: Inclusion of people with disabilities 6/04/2007 First steps: stories on inclusion in early childhood education, UNESCO. 28/04/2007 Keeping our promises on education 3/05/2007 Spina Bifida & Hydrocephalus awareness campaign in Nairobi city 3/04/2007 UN Convention on the Rights for Persons with a Disability 2/04/2007 Tallinn makes step forward 2/04/2007 WHO seeks disability experts through IF 26/02/2007 EDF resolution on active termination of life adopted 15/05/2007 Second award for Ben Warf 18/05/2007 Pierre and Maarten Mertens visiting IF projects in East-Africa 2/04/2007 IF Conference registration 1/06/2007 IF Award 2007 2/04/2007 IF Conference "Tomorrow" 5/04/2007 Training staff orphanage in Vietnam 28/04/2007 Keeping our promises on education 6/04/2007 18th International IF Conference "Tomorrow" 3/04/2007 UN Convention on the Rights for Persons with a Disability 26/02/2007 EDF resolution on active termination of life adopted 7/05/2006 IF Child Help 6/04/2007 First steps: stories on inclusion in early childhood education, UNESCO. 2/04/2007 WHO seeks disability experts through IF 2/04/2007 Tallinn makes step forward 24/04/2007 European Conference MDGs: Inclusion of people with disabilities 5/04/2007 IF training visit in Vietnam 15/02/2007 PhD study on effect of Spina Bifida on parents 2/02/2007 LIESJE now available in Slovak 30/01/2007 Educational advisory and support service in Dublin 9/02/2007 Is a derailed prenatal screening leading to eugenics? 2/02/2007 FFI Leadership Award 19/12/2006 United Nations adopt Disability Convention: 13 December 2006 25/01/2007 Innovating for Continence: The Engineering Challenge 19/12/2006 Anti-discrimination manual for NGOs 9/01/2007 Trolls and spina bifida 19/12/2006 International Smiling Child Festival 18/01/2007 Changing lives with the CIC programme 12/01/2007 New President for AGEB 15/01/2007 IF Board Meeting in Brussels 23/01/2007 Old face back in Finland 22/12/2006 Parents teaching parents 24/01/2007 "1 Million 4 Disability" campaign launched 16/01/2007 Brussels Airlines is IF's official carrier 16/01/2007 IF Conference "Tomorrow" 15/01/2007 Official opening of new IF office 5/01/2007 Folic Acid Awareness Week and Birth Defects Prevention Month in America 22/12/2006 Solidarity between parents 19/12/2006 Do not eliminate children with spina bifida by injection 19/12/2006 CURE International opens new children's hospital in Zambia 22/12/2006 IF meets new management CCBRT Tanzania 4/01/2007 Nepalese prize for specific journalism on disabilities 19/12/2006 International and European Day of Disabled People 18/01/2007 Old face back in Finland 9/01/2007 Examples of Good Practice on Disability requested 19/12/2006 Call for papers IF conference 2007 7/07/2006 IF in EDF 5/04/2006 IF collaborates with Handicap International 7/07/2006 Composition of the new IF board 7/07/2006 Opening address at the International Conference 7/07/2006 IF Award 2006: Mr Bo Hjelt 7/07/2006 IF annual International Conference 7/07/2006 Learning through laughter, play, art, music and drama 7/07/2006 IF welcomes five new members to its network 7/05/2006 IF Child Help 9/10/2006 Wonderful event in Pilica (Poland) on 16 and 17 September 10/10/2006 A larger IF office 11/10/2006 IF at Belgian Embassy in Uganda 10/10/2006 Without creating an NGO island 8/09/2006 Proposal for mandatory fortification of bread approved 22/08/2006 IF Digital Knowledge Network - beta version online 5/09/2006 SFIDA stands up for the rights of families with disabled children 5/04/2006 IF collaborates with Handicap International 22/08/2006 Clinton School of Public Service shows interest in Spina Bifida 29/08/2006 New human rights UN Convention protects the rights of 650 million disabled people 7/07/2006 IF in EDF 28/08/2006 SBAA, SBF, the National Council of La Raza, GRUMA and Wal-Mart unite to help prevent Spina Bifida in the US 23/08/2006 Elections are Congo's hope 5/09/2006 Third National Week on Prevention in Italy: 1 - 8 October 28/08/2006 Towards mandatory fortification in Australia/New Zealand 7/07/2006 IF Award 2006: Mr Bo Hjelt 7/07/2006 Learning through laughter, play, art, music and drama 7/07/2006 IF welcomes five new members to its network 7/07/2006 Opening address at the International Conference 7/07/2006 Composition of the new IF board 7/07/2006 IF annual International Conference 29/03/2006 EU project on prevention of NTDs in Turkey 29/03/2006 Update on IF's Campaign for Mandatory Food Fortification 12/04/2006 UK wants to improve folate status young women 27/02/2006 Report 1 Indian update on Spina Bifida and Hydrocephalus 30/03/2006 IF-conference "Access" in Helsinki, Finland 1/03/2006 Els Declercq has given birth to a son Jef 31/03/2006 CIC treatment in Viet Nam 5/05/2006 IF-Conference Helsinki: reduced registration fee until 15 May 18/10/2005 SBAA publication: Guide for Adults Living with Spina Bifida 12/10/2005 Book of IF president translated in Norwegian 10/11/2005 Ireland's IASBAH and IF towards European Food Fortification 27/01/2006 CP-liitto and IF conference "Access" 23/01/2006 Slovak solidarity for Africa 18/01/2006 New study comparing two hydrocephalus treatments in Africa 18/01/2006 IF lobbies Irish MEP for mandatory flour fortification 8/12/2005 Oldest person with spina bifida is still called Albert 19/12/2005 IF and BOSK lobby against the “Groningen protocol” 18/01/2006 First National Update on Spina Bifida and Hydrocephalus in India 15/11/2005 New data on disability at Inter-American Development Bank 14/11/2005 Looking for the oldest person with spina bifida 15/11/2005 9th Symposium on spina bifida and sexuality in Brussels 8/09/2005 Internet tools: spinabifida.meetup 22/09/2005 5th ASCon conference in Vietnam 15/11/2005 CIC training weeks in Dar es Salaam 15/11/2005 IF's African Workshop 10/11/2005 Meeting with Dutch doctors De Jong and Kompanje 24/10/2005 BBC Radio 4 programme on spina bifida in Guatemala 6/09/2005 Hurricane Katrina also affects persons with spina bifida 12/07/2005 IF Child Help 4/08/2005 Adult Day at International Conference 12/09/2005 Spina Bifida and Hydrocephalus workshop in Cape Town 8/09/2005 New staff at IF Brussels office 6/09/2005 A disability hospital in Arequipa 9/09/2005 Italian week for prevention of spina bifida, 1-9 October 26/09/2005 Annual African IF workshop 6/09/2005 Growing recognition of IF-expertise 8/09/2005 World Health Assembly resolution ‘Disability, including prevention, management and rehabilitation’ 28/09/2005 International workshop in Thailand 12/10/2005 Storm Stan affect people with disability in Guatemala 12/09/2005 IF finishes EU project on Ethics 9/09/2005 Slovak Association organises 2nd conference 7/09/2005 Public Health Grand Rounds Series: Folic Acid 2/06/2005 2007 to be "European Year of Equal Opportunities for All" 12/07/2005 General Meeting IF 12/07/2005 32nd SBAA and 16th IF Conference, Minneapolis, 26-29 June 2005 6/07/2005 IF Annual Report 2004 6/06/2005 Solidarity from the Netherlands 1/06/2005 IF President lobbies for access on health 26/05/2005 Symposium on Folic Acid and Health 26/05/2005 Interview IF president on ABC Local Radio Australia 26/05/2005 Fast growing network in Central and South America 23/05/2005 Scientific publication on outcome Chhabra shunt 17/05/2005 Honey, salt water and sun 18/05/2005 Cooperation in China 18/05/2005 Mercy killings at the University Medical Center Groningen, the Netherlands. 17/05/2005 Voluntary fortification 25/05/2005 New European Countries adopt IF resolution ‘the right to be different.’ 27/05/2005 new Chair of Norwegian Association 1/06/2005 Catalan organisation for spina bifida and hydrocephalus 10/06/2005 A long process to become adult for disabled teenager 27/05/2005 Olympian among the IF-members 18/05/2005 New face at IF 12/11/2004 Yearly International Conference 19/05/2005 New perspectives for training in Africa 18/05/2005 Workshop on ethics with new accessed EU countries. 19/01/2005 Scientific publication on ETV results in Uganda 10/02/2005 Adult Day for SBAA-IF Conference 2005 3/11/2004 LIESJE now available in French 6/12/2004 the Guatemalan / Colorado link 16/12/2004 Ola Bébé 3/01/2005 The definitive hydrocephalus text for parents 4/01/2005 After tsunami, relief begins 1/02/2005 Measuring the extent of discrimination: new studies on use of data 2/02/2005 “Improving the life chances of disabled people” 13/02/2005 IF and BOSK for a voice on the right to live 10/02/2005 IF Board exchanges with Belgian Associations 10/02/2005 IF Board exchanges with Belgian Associations 3/11/2004 LIESJE now available in French 3/01/2005 The definitive hydrocephalus text for parents 16/12/2004 Ola Bébé 1/02/2005 Measuring the extent of discrimination: new studies on use of data 6/12/2004 the Guatemalan / Colorado link 2/02/2005 “Improving the life chances of disabled people” 4/01/2005 After tsunami, relief begins 29/12/2004 That 2005 may become a year full of diversity 25/11/2004 IF African workshop on hydrocephalus 26/11/2004 Supporting disabled adults as parents 29/11/2004 Folate deficiency in women at child bearing age 27/10/2004 IF organisation of the month 29/10/2004 Disabled people’s costs of living in UK: ‘More than you would think’ 30/11/2004 Recommendations for increasing pace of neural tube defect prevention globally 20/12/2004 Christmas Party of the Asociación Guatemalteca de Espina Bífida 3/11/2004 The European Commission launches a public consultation on the creation of a Fundamental Rights Agency 2/12/2004 IF is looking for a Fundraiser/Director 23/04/2004 Liesje 30/09/2004 Bram and Els unusual wedding presents 3/11/2004 IF African workshop on Hydrocephalus 8/09/2004 Opening Speech 8/09/2004 Emily's letter to the president 4/10/2004 IF AWARD 2004 6/09/2004 Crossing Borders 8/09/2004 Crossing Borders 23/04/2004 IF organisation of the Month 19/08/2004 IF Award 2004 23/06/2004 Flour Fortification Initiative 22/06/2004 Prenatal medical treatment 20/07/2004 Galician Confederation of People with a Handicap 28/05/2004 Interview "A good Life"