🗙
HomeOur WorkNETWORK DEVELOPMENT
Go Back

The International Federation for Spina Bifida and Hydrocephalus holds Special Consultative Status at the Economic and Social Council of the United Nations and Participatory Status at the Council of Europe.

IF has representation on different Boards: Dr Sylvia Roozen – IF Secretary General represents IF in the Executive Management Team of FFI; Cato Lie – IF President who represents IF in the board of EDF and IDA.

IF IS MEMBER OF

if has official collaboration with

IF COLLABORATES ON PROJECTS WITh

IF’s PARTNERS IN DEVELOPING COUNTRIES

IF GETS FINANCIAL CONTRIBUTION FROM

Related news

31 October 2024

Updates from the 30th International Conference on Spina Bifida and Hydrocephalus

The 30th International Conference on Spina Bifida and Hydrocephalus took place from October 24 to 26 in Kuala Lumpur Malaysia. Together, we discussed strategies for adressing gaps in healthcare and prevention, while promoting a multidisciplinary approach that places our community at its core. Our heartfelt congratulations to SiBIAM as hosting association. This conference was a starting point for future meetings whereby we continue building bridges together!
Read more
27 May 2024

WHA77 Side Event Congenital Anomalies and Universal Health: Leaving No One Behind

On May 27 IF together with its partners organised an in-person WHA side event titled ‘Congenital Anomalies and Universal Health: Leaving No One Behind’. During this side event on May 27th, 2024 it was discussed what resources are needed to serve children born with congenital anomalies around the globe in need of lifelong care, and how to advocate with policymakers for their inclusion in the universal health coverage agenda.
Read more
27 May 2024

IF meets WHO champions at the WHA77

During the WHA77 IF Secretary General discussed joint approaches to ensure social protection for food security and nutrition for all!
Read more
6 November 2023

IF joins the 49th ICBDSR Annual Meeting

On November 6 2023, Dr Sylvia Roozen - Secretary General of the International Federation for Spina Bifida and Hydrocephalus emphasised in her keynote address the important role ICBDSR members have on surveillance research to inform NTD Prevention & Care.
Read more
28 July 2022

IF Webinar Learning from Experience: Strategic Advocacy for Primary Prevention

On July 15, 2022, IF held an experience exchange and sharing webinar named ‘IF webinar Learning from Experience: Strategic Advocacy for Primary Prevention’. The webinar was an experience exchange and twinning opportunity for all IF members, in which representatives from Africa, Asia-Pacific, Latin-America and Europe who have advanced their national advocacy for primary prevention shared their key element of success, the process, lessons learned and advice for all participants.
Read more
23 June 2022

IF MEMBERS TRAINING: FROM LOCAL TO GLOBAL – HOW TO INFLUENCE INTERNATIONAL ACTIONS THROUGH NATIONAL ADVOCACY

The IF members training “From local to global - how to influence international actions through national advocacy” taking place on May 6 2022 provided an overview of key concepts and processes of international organisations.
Read more
23 June 2022

IF Annual Report 2021 is now available!

IF Annual Report 2021 highlights all of IF activities and achievements of the past year. The year 2021 was an active one with many activities and challenges. Some of the activities were affected by the COVID-19 pandemic. Therefore, IF organised its activities in a digital format. These activities such as an escape room meeting, training opportunities, international awareness days, and the IF conference for persons with SBH on multidisciplinary care were well-received. Here, in this annual report 2021, the actions achieved for human rights, primary prevention, optimising management and care, raising awareness, as well as international solidarity are highlighted.
Read more
6 October 2021

WSBHD21 side-event ‘From Traditional to Digital - Unlock Your Digital Communication’

On October 25th 2021, the International Federation for Spina Bifida and Hydrocephalus together with worldwide members will celebrate the World Spina Bifida and Hydrocephalus Day 2021 (WSBHD21) under the theme “Unlock Your Rights to Health”. IF facilitates dialogues and exchanges of best practices among IF Member Associations around the world to optimise the dissemination of information and campaigns on digital platforms.  Especially for the WSBHD21, IF organises a side event on Communication: ‘From Traditional to Digital - Unlock Your Digital Communication’ to which all Communications Coordinator of Member Associations are exclusively invited.
Read more
2 November 2020

WORLD SPINA BIFIDA AND HYDROCEPHALUS DAY - The First Online Event 2020

IF reflects on the WSBHD 2020 - The World Spina Bifida and Hydrocephalus Day (WSBHD) on October 25 is a very special highlight on our International agenda. It gives us the opportunity to raise awareness on SBH and share our stories with our stakeholders.
Read more
20 July 2020

IF Annual Report 2019 is now available

IF is happy to publish our Annual Report 2019! You will learn about IF's projects and our members' achievements. Last year was IF's 40th anniversary so it definitely was a very important year for the SBH community.
Read more
4 June 2020

Welcome to Sylvia Roozen: IF new Secretary General

IF is very happy to welcome our new Secretary General. From June 1, we count with Dr. Sylvia Roozen to lead IF into the future together with the whole team!
Read more
8 April 2020

IF is looking for a European Policy Officer

We are looking for a new colleague to join the IF team who has experience on social policy, disability rights or health. Deadline for applications is 27 April. Online interviews will be held the week of 4 May.
Read more
21 February 2020

New IF Membership guide

The new IF Membership guide is finally online! Have a look at our network structure and voting system. Find out more about how to become a member of IF!
Read more
11 February 2020

We are recruiting an Administration Officer

IF is looking for an Administration Officer to join our team in Brussels. Deadline for applications: 2 March 2020
Read more
29 January 2020

Looking for a new Secretary General at IF

Are you a change maker, good at finding funding opportunities, an effective advocate and more? Check out our vacancy!
Read more
16 September 2019

IF analysis on the new European Commission

IF has developed an analysis on which new commissioners are key for the spina bifida and hydrocephalus community. Take a look!
Read more
16 July 2019

IF represented at the EPF STYPA!

IF participated at EPF STYPA 2019 edition organised in Vienna from 7-10 July 2019! The main focus was on ethical dilemmas and evolution of patient advocacy.
Read more
1 July 2019

IF joins Global WHO Birth Defects Technical Working Group

IF Secretary General has joined a panel of experts to work together on strengthening birth defects surveillance globally
Read more
28 May 2019

Universal Health Coverage: Including Rare Diseases to leave no one behind

During a side event organised by Rare Diseases International at the 72nd World Health Assembly, IF Secretary General talked about the importance of data in the areas of care and prevention, in the frame of Universal Health Coverage.
Read more
22 May 2019

IF Secretary General re-elected in EURORDIS Board of Directors

IF is very happy to announce that our Secretary General has been re-elected in the Boards of Directors of EURORDIS, which is now focusing on promoting holistic care for people living with rare diseases all over Europe.
Read more
9 May 2019

'SKI FOR ALL' project: guidelines

Promoting inclusive ski lessons for youth with physical disabilities to learn new skills, build confidence, and improve health for all.
Read more
8 April 2019

World Health Day 2019: we need a Universal Health Coverage!

This years' World Health Day was focused on Universal Health Coverage (UHC). We joined the European Patients' Forum (EPF) and six other patients organisations, asking together for UHC in Europe and all over the world!
Read more
13 March 2019

Elena designated Director of the National Observatory of Disability

It's such a great news to learn that Elena Zappoli, who is IF Board member and President of APEBI, has been designated as Director of the National Observatory of Disability!
Read more
28 February 2019

#ShowYourRare for Rare Disease Day 2019!

For this year Rare Disease Day we invite you to join us in raising awareness and spreading the voice about rare diseases, such as spina bifida and hydrocephalus!
Read more
25 February 2019

IF Secretary General advocates for rare diseases at UN

IF Secretary General was at the United Nations headquarters in New York for the Annual Meeting of Rare Diseases International, where he gave a speech focused on how to integrate rare diseases into the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) based on the experience of IF.
Read more
13 February 2019

World Birth Defects Day 2019 Toolkit

The World Birth Defects Day (WBDD) is approaching, and we decided to create a social media toolkit to support everyone who wants to make their voice heard!
Read more
From left to right: Lieven Bauwens (IF), Alberto Allegro (Nouryon), Anna Verster (IF) and Juliana Ruparelia (Nouryon).
31 January 2019

IF and FFI renew the Smarter Futures partnership with Nouryon

2019 marks the 10-year anniversary of the Smarter Futures partnership in which Nouryon collaborates with the International Federation for Spina Bifida and Hydrocephalus (IF), Helen Keller International (HKI), and the Food Fortification Initiative (FFI) to improve and increase availability of fortified wheat, maize flour and rice that meets quality and nutrition standards in Africa.
Read more
20 November 2018

IF workshop in Madrid

We were in Madrid this November for our European Workshop, this year focused on continence management and ageing with spina bifida and hydrocephalus.
Read more
6 November 2018

In Memoriam: Thomas (Tom) Edmund Baroch, disability advocate

The SBH community has lost one of its exemplary members with the passing away of disability advocate Tom Baroch
Read more
2 November 2018

Mirela Bukovac at the Eurochild Conference 2018

IF Youth Group member Mirela participated at the Eurochild Conference 2018, "Building a better Europe with children: All aboard!"
Read more
23 October 2018

Final report on 'My Rights' training

From 5 to 7 October we were in Lisbon for a training promoting the rights of young people with spina bifida and hydrocephalus. Take a look at the report and the video we realized about the training!
Read more
23 August 2018

Rebecca Alitsi, former IF fellow, co-facilitator at IDA’s workshop

Rebecca Alitsi, from the United Disabled Persons of Kenya and former IF fellow, has been selected as one of the co-facilitators for a workshop on ensuring the rights of indigenous persons with disabilities.
Read more
13 August 2018

IF Award at the 28th International Conference on SBH in India!

Congratulations to Dr. G.D. Agrawal, founder of the company Surgiwear in India, which produces the Chhabra shunt for the treatment of Hydrocephalus!
Read more
17 July 2018

Update for WSBHD18

There are almost 3 months left until 2018 World Spina Bifida and Hydrocephalus Day and we need your support! Our main activity for 2018 WSBHD focuses on collecting 25 testimonies from people with SBH and their families, publishing one testimony per day starting on October 1st 2018.
Read more
28 June 2018

IF's Annual Report 2017 is out now!

The IF General Assembly has approved our Annual Report 2017. The report highlights the progress of the organisation and the continuing development of activities, projects and workshops throughout the past 3 years.
Read more
8 June 2018

First woman with a disability elected for the UN CEDAW Committee

Ana PalĂĄez NarvĂĄez is the first woman with disabilities elected for the UN Committee on the Elimination of Discrimination against Women (CEDAW).
Read more
31 May 2018

Continence management high on the agenda at IF European Workshop in Bulgaria

European IF members came together in Sofia, Bulgaria, to discuss their priorities, achievements and concerns and receive the latest update on IF's plans and activities.
Read more
23 May 2018

Training in Uganda on the CRPD and SDGs for persons with disabilities

IF fellow Rebecca Opetsi joined the so called Bridge CRPD-SDG training in Kampala, Uganda, to become a lead trainer herself.
Read more
9 May 2018

Register now for the 28th International Conference on Spina Bifida and Hydrocephalus!

Join us in New Delhi, India, for the 28th International Conference on Spina Bifida and Hydrocephalus!
Read more
30 January 2018

Join us for the IF 28th International Conference in New Delhi, India

For the first time, IF will hold its annual international conference in South-East Asia, from Friday August 10 to Sunday August 12, 2018.
Read more
27 January 2018

IF ERN session: How can your association work with healthcare providers?

IF organised a joint session for representatives of its European member associations and a group of SBH clinicians
Read more
4 December 2017

Towards mainstreaming disability in the EU

IF staff and Youth Group celebrates the European Day of Persons with disabilities.
Read more
29 November 2017

IF European Workshop in Stockholm

IF European Workshop from the 25th-26th of November in Stockholm.
Read more
20 November 2017

Workshop on a multidisciplinary health system in Zagreb

IF Croation member, Aurora, organised a workshop in Zagreb.
Read more
15 November 2017

African Workshop in Mombasa

IF's biennial African Workshop in Kenya
Read more
11 November 2017

ICBD2017 highlights the importance of parents-patients organisations

8th International Conference on Birth Defects and Disabilities in the Developing World
Read more
7 August 2017

Expanding the LATAM Spina Bifida and Hydrocephalus network into Ecuador

A delegation from IF member APEBI visited Ecuador to help improve the quality of life of persons with Spina Bifida and Hydrocephalus in this country
Read more
3 July 2017

Training for youth with disabilities on independent living skills, human rights and advocacy

11 young people with spina bifida and/or hydrocephalus are trained to become the future leaders of the SBH community
Read more
18 June 2017

Two former IF Presidents reflect on the start of IF

How and why did IF start? Two former IF Presidents discuss the beginnings of IF.
Read more
31 May 2017

How to write project proposals and focus on mental health at IF EU workshop

IF's European members from 17 European countries came together to receive training from experts on different topics and discuss IF's strategy 2018-2022
Read more
31 January 2017

UN CRPD Advocacy Training Course for young people

Young people with Spina Bifida and Hydrocephalus came together in Dublin to learn more about disability rights
Read more
2 November 2016

What's our next Turning Point? The Global Prevention Initiative!

During the past three days Ghent hosted almost 300 participants of the Turning Points Conference. It was already the 27th International Conference on Spina Bifida and Hydrocephalus. The debates were very innovative, frank and sometimes emotional. One of the highlights of this weekend was the official launch by HRH Princess Astrid of Belgium of the first Global Prevention Initiative.
Read more
13 July 2016

European IF members priorities: Independent living, right to life and ageing with spina bifida

The  first European workshop of 2016 took place on 18-19 June in Budapest, Hungary. IF members from 17 European countries came together to discuss their working priorities and to give the IF secretariat guidance for its 2017 activities.
Read more
15 September 2015

Co-organised Equality 2015 conference: improving care and prevention for Spina Bifida and Hydrocephalus

The two-day International Conference on Spina Bifida and Hydrocephalus, Equality, organised by the International Federation for Spina Bifida and Hydrocephalus (IF) together with the Associazione Spina Bifida Italia (ASBI), will be held from 16 to 18 October 2015 in Solbiate Olona, Italy.
Read more
22 July 2015

European IF members discuss right to health and cross-border networking between associations

This year's first IF European workshop took place on 3-4 July in Vilnius, Lithuania. IF members from 15 European countries came together to discuss their working priorities and to give the IF secretariat guidance for its 2016 activities.
Read more
8 June 2014

From the new LATAM network for spina bifida and hydrocephalus: Genetic factors and social inclusion are fundamental worldwide!

During last two days Buenos Aires was filled with discussions on key topics for the Spina Bifida and Hydrocephalus (SBH) global community. Genetic factors of SBH, social inclusion, and the right to health were at the top of the agenda.
Read more
1 July 2013

IF's 24th International Congress 2013: Unite & Share

IF’s 24th International conference “Unite & Share” that took place in Izmir on 28 and 29 June was a great success and was well-attended by representatives of IF member organisations and local people engaged in the field of Spina Bifida and Hydrocephalus.
Read more
15 June 2012

IF Annual Conference 2012: Finding Our Way

IF’s 23rd International conference “Finding Our Way” that took place in Stockholm on 15 and 16 June was a great success and well-attended; Over 320 participants from 25 different countries covering most of Europe, as well as the USA, Canada, Russia, Argentina and Kenya gathered for two days to share the latest information related to Spina Bifida and Hydrocephalus.
Read more

Related events

Oct 25, 2020 Worldwide

World Spina Bifida and Hydrocephalus Day

Tell your story to help raise awareness on living with spina bifida and hydrocephalus during the COVID-19 pandemic!
Read more
Mar 3, 2020 Worldwide

World Birth Defects Day

Join in and help us to raise awareness on World Birth Defects Day! #WorldBDDay
Read more
Co-funded by the European Union.
Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or the European Commission. Neither the European Union nor the granting authority can be held responsible for them.
Copyright © 2024 IF Global. All Rights Reserved.  |  Sitemap   Privacy policy   Cookie policy
Website laten maken door Conversal