IF has two categories of membership: organisational membership and support membership.
Organisational members are officially registered associations of people with Spina Bifida and/or Hydrocephalus and/or their relatives, that work within a defined territory and are open to all people within this territory.
Support membership is open to individuals, sympathisers, professionals, companies, students and anyone with an interest in Spina Bifida and/or Hydrocephalus. The annual fee for the IF support membership is 50€. Support members have no voting rights.
Support of national associations
IF developed a basic manual on how to set up a SBH support group. IF has compiled a set of guidelines for national associations, to assist national associations in their development. Given the importance and valuable work that each organisation does in its respective country, IF strives to reinforce national organisations through a variety of activities including workshops, conferences, knowledge sharing, capacity building as well as consultancy and individual guidance.
How to become IF member?
To learn more about how to become IF member, please download the IF Membership Application form.
Official IF members
Association des malades de Spina Bifida de Mostaganem
Asociación Para la Espina Bífida e Hidrocefalia (APEBI)
Spina Bifida Association Queensland
Northcott Spina Bifida Group
Spina Bifida und Hydrocephalus Österreich (SB&HÖ)
Vlaamse Vereniging voor Spina Bifida en Hydrocephalus vzw (VSH)
Spina Bifida and Hydrocephalus-Bulgaria (SBHB)
Fundación Mónica Uribe Por Amor
Udruga osoba i roditelja djece sa spinom bifidom "Aurora"
Rygmarvsbrokforeningen af 1988
The Estonian MMC and HC Society
Suomen CP-liitto ry
Fédération Française des Associations du Spina Bifida (FFASB)
Arbeitsgemeinschaft Spina Bifida und Hydrocephalus (ASBH)
Hellenic Associaton for Spina Bifida and Hydrocephalus
Asociación Guatemalteca de Espina Bífida (AGEB)
Fundación Amado Josue
Spina Bifida and Hydrocephalus section of MEOSZ
Spina Bifida Foundation
Spina Bifida Hydrocephalus Ireland (SBHI)
Spina Bifida Association of Japan
Spina Bifida ir Hidrocefalija asociacija
Association pour le Spina Bifida a.s.b.l.
Asociación Mexicana de Espina Bifida, A.C. (AMEB)
Mongolian Spina Bifida Foundation “Maral Angel”
BOSK Work Group Spina Bifida & Hydrocephalus
Festus Fajemilo Foundation
Ryggmargsbrokk- og hydrocephalusforeningen
Asociación de Espina Bífida e Hidrocefalia del Perú (ASESBIH PERÚ)
Associação Spina Bifida e Hidrocefalia de Portugal (ASBIHP)
Asociatia Romana de Spina Bifida si Hidrocefalie
ARSBH Facebook page
Association of Spina Bifida and Hydrocephalus St. Petersburg
Scottish Spina Bifida Association (SSBA)
Spina Bifida and Hydrocephalus Association of Serbia
Slovenská spoločnosť pre spina bifida a/alebo hydrocefalus, o.z.
Federación Española de Asociaciones de Espina Bífida e Hidrocefalia (FEBHI)
Associació Catalana d'Espina Bífida i Hidrocefàlia
Asociación Madrileña de Espina Bífida e Hidrocefalia – A.M.E.B
Spina Bifida Federal Association
Schweizerische Vereinigung Spina Bifida und Hydrocephalus (SBH)
Spina Bifida Derneği
Central Uganda Spina Bifida and Hydrocephalus Network
Shine - Spina bifida • Hydrocephalus • Information • Networking • Equality
Spina Bifida Association of America (SBAA)
Pediatric Hydrocephalus Foundation
Other contacts for Spina Bifida and Hydrocephalus
Anomalies prénatales et hydrocéphalies Burkinabe (APHB)
Spina Bifida and Hydrocephalus Association of Canada (SBHAC) /
Association de spina-bifida et d'hydrocéphalie du Canada (ASBHC)>
Spina Bifida and Hydrocephalus Association of BC
Spina Bifida and Hydrocephalus Association of Southern Alberta
Spina Bifida and Hydrocephalus Association of Northern Alberta
Spina Bifida and Hydrocephalus Association of Saskatchewan - North
Spina Bifida and Hydrocephalus Association of Manitoba
Spina Bifida and Hydrocephalus Association of Nova Scotia
Spina Bifida and Hydrocephalus Association of Quebec
Association de Spina-Bifida et d'Hydrocéphalie du Québec
Spina Bifida & Hydrocephalus Association of Ontario (SBHAO)
Santiago S.P.B. and Hydrocephalus Self-Help Group (ACHEB)
Chinese Spina Bifida Association
Eeska asociace pro spinu bifidu a hydrocefalus (EASBaH),
L’Association Spina-Bifida de Djibouti
Fax: +253 35 89 323
LO: Abdallah Khayari
Bifid Spine Dominican Asociation, Inc.
Fundacion Hondurena de espina bifida e hidrocefalia (FUNHDESHI)
The childhood Spina Bifida Support Group of Hong Kong
Félag áhugafólks um hryggrauf
Indian Spina Bifida Association (ISBA)
Komunitas Spina Bifida Indonesi
Spina Bifida and Hydrocephalus Association of Malta, Ghaqda Spina Bifida u Hydrocephalus
The Mexican Association for Spina Bifida and Hydrocephalus
Asociación de Espina Bífida de Nuevo León
Abu Raya Rehabilitation Unit
Asociación de Espina Bífida e Hidrocefalia de Puerto Rico, Inc.
Saudi Spina Bifida Support Group
Cheshire Homes Katalemwa
Asociación Venezolana de la Espina Bífida (AVEB)
Zambian Association for Spina Bifida and Hydrocephalus
I am pregnant with a child with Spina Bifida or Hydrocephalus.
What now? Why me?
Confusing feelings and emotions when you hear the news that your baby has Spina Bifida or Hydrocephalus. It is important to take some time and think and talk about what you feel. Other parents wrote down what they think, which is important when hearing this news.
Being pregnant with a child with Spina Bifida and Hydrocephalus
- I am pregnant with a child with Spina Bifida and/or Hydrocephalus. The child I am expecting has a disability, what now?
- Take time to think. You are shocked and may feel desperate. This is normal and it will take time to adapt to this new situation. You need not panic - there is time for you and your partner to look carefully at this. You need time for yourself, for your partner and for the baby who will be different in some ways. Your baby in its mother's womb is in the best environment it can be. Your child has no pain. You have time to make unhurried, unpreserved and informed decisions.
- So much emotion, such confused thoughts
- Talk about what has happened to you. Like all parents you looked forward to a normal healthy, baby. You did not expect the information you have just received.. As parents, it is important to express your feelings to each other. Later, talk to close friends and family. This is perhaps one of the most difficult moments of your life. So accept all help you can get. If you find it impossible to discuss these things a counsellor will assist you.
Both partners should be together to hear the information and medical advice given. Remember, medical advice is important, but should be balanced with all other factors. Doctors will explain the medical factors of your child's condition. but there are other sources of information. Try to receive this information as a couple. It is easier if both partners hear and share all information. Together you hear more . The stark medical information is can be alarming and may need repeating several times before you really understand all that is being said and you need time to absorb this information.. Even in today's technical age, it is difficult for doctors to assess accurately the severity of disability of your child even if they are specialists in the condition. Some gynaecologist are very negative when assessing the quality of life for those with Spina Bifida and Hydrocephalus. This is a pity because most gynaecologists lack practical experience of these conditions. Therefore it is good to have more sources than your gynaecologist. Internet is useful for basic information. But you should also contact the parent organisation of your region ,or a consultation with Spina Bifida team will help you.
Why me, why us, why our child?
This is usually the first reaction of most people. It is not your fault. It is difficult to accept that you and not another are the one or two in a thousand parents who are faced with this. Scientific research shows that many factors contribute to the development of Spina Bifida and Hydrocephalus. It is important to remember that it is not your fault. It was not your diet or any accident that you had that caused child's disability. Spina Bifida can occur even in ideal situations. What we do know is that taking folic acid before conception and into the third month of pregnancy can reduce the possibility of Spina Bifida by 75%.
What can you do to improve your child's situation?
There is a lot you can do, but one of the most important things it to take time and to speak about your feelings. The following is a list of some of the things you can do:
- Continue the healthy lifestyle as you had from the beginning of pregnancy. Smoking and abuse of alcohol is bad for all children also when they have a disability.
- Accept that the unborn child is yours. It is the same child that you loved before the diagnosis. The only difference is the information you have received. You love your child and this love will help you and your child in many ways.
- Make an appointment with specialist advisors who can provide up-to-date information about Spina Bifida and Hydrocephalus. Treatment has improved dramatically over the last decade and this will influence the prognosis.
- Ask to meet other parents who have a child with Spina Bifida and Hydrocephalus. They can talk to you about how they cope and live with the problems which may arise.
- In most cases the ideal situation for your child is to have a full and complete pregnancy. Your child is safe within you.
- Usually, treatment will start immediately following the birth. This will involve closure of the back and often also treatment of the Hydrocephalus. Choice of consultant, preferably a skilled neurosurgeon, is important. Ideally, choose a hospital with a specialist Spina Bifida and Hydrocephalus team for the delivery, so that mother and child will not be separated. If this is not possible the expertise of a skilled (neuro-)surgeon is important as this can prevent many problems and may reduce the level of paralysis.
- Read everything you can find about Spina Bifida and Hydrocephalus and inform grandparents and your friends about your special child.
- You will find information on the web about a new technique where surgery can be carried out on the unborn child in the womb. There is a risk for the mother as well for the unborn child and sometimes the results can be disappointing.
Some doctors will propose an abortion or a termination of pregnancy.
Some doctors judge that people with Spina Bifida and Hydrocephalus have a very poor quality of life which may not be worth living. This is a narrow, medically-aligned view which disregards other viewpoints. Indeed, there are many medical problems related to Spina Bifida and Hydrocephalus, but quality of life is not only a medical matter. Those best qualified to judge -people with Spina Bifida and Hydrocephalus- are convinced that their lives are definitely worthwhile. Adults with Spina Bifida and hydrocepehalus who are talking below about their lives, were born at times when medical care was not as effective as it is in today's times.