Resources for Patients
The EANS's mission is to provide support not only to neurosurgeons, but also to their patients. We cannot endorse or recommend any individual specialists, but we are keen to provide useful information and contacts.
Please note that this page is still under construction and development. We will do our best to include much more content in near future.
If you would like suggest an organization to be added on our website or any topics that may be missing, please contact us to firstname.lastname@example.org, all suggestions and comments are most wecome.
Neurosurgical Conditions and Treatments
In English: To find up-to-date information available on a wide range of neurosurgical conditions, please click here. Included are essential components such as prevalence and incidence statistics, risk factors, symptoms, diagnosis, and both surgical and nonsurgical treatment options. The EANS would like to thank the American Association of Neurological Surgeons (AANS) for providing this resource and sharing it with us.
A Patient Resource Centre from the Neurosugical Atlas by Aaron Cohen-Gadol.
The Brain & Spine Foundation is a UK charity providing information and support on the full range of neurological conditions during diagnosis and treatments, and through the longer term of the patient's journey. http://www.brainandspine.org.uk
In French: The Société Française de Neurochirugie (SFNC) has a range of patient "fiches d'informations" on different neurosurgical conditions at: http://www.neurochirurgie.fr/spip.php?rubrique51.
The website of the SFCR (Société Française de Chirurgie rachidienne), the French Society of Spinal Surgery, has a patients' resources section in French. This includes both information sheets on a range of common spinal conditions and a directory of surgeons in France.
Eurospine's Patient Line has patient information on spinal pathologies in English, French, German, Greek, Italian, Spanish and Turkish
- Cerebrum (Czech Republic)
Cerebrum - Brain Injured and Families is a non-profit association, which was set up to contribute to understanding of brain injury, to provide information and to support people with traumatic or other acquired brain injury, their families and caregivers.
Note: Most of the materials are available in Czech only and they are mainly focused on patients from the Czech Republic.
- Danish Brain Injury Association (DK)
The Danish Brain Injury Association is a private, independent organisation working for people with brain injuries and their families. The organisation operates through fundraising.?The association was founded in 1985 and today approximately 2200 families are members.?Her Royal Highness Crown Princess Mary is the patron of The Danish Brain Injury Association.
Note: The website is only in Danish.
- Brainstrust (UK)
“There are over 55,000 people living with a brain tumour in the UK. Brainstrust is the charity and the community that’s here to help these people and those who look after them, whoever they are and no matter where they are on their journey. We also know we don’t have all the answers. But chances are we know someone who does.”
- Brain Tumour Research (UK) This is not really a patients’ organisation as such; rather a specialist fundraising organisation.
- HeadSmart (UK) A project that aims to enhance the awareness of brain tumour symptoms in children and young people.
- The International Brain Tumor Alliance
“The International Brain Tumour Alliance (IBTA) is a unique global network for brain tumour patient and carer groups around the world. We work alongside, and represent, members of our community - including researchers, scientists, clinicians, nurses and allied healthcare professionals - to engage in advocacy, to raise awareness and to share information.”
- Meningioma UK (UK)
Founded in 1998 by meningioma patients, Caroline Rutgers and Ella Pybus, Meningioma UK continues to offer support and information to meningioma patients and carers affected by a meningeal tumour(s) of the brain or spinal cord. We are the only national meningioma organisation in the UK, and one of only a handful of meningioma groups across the world.
- Cavernoma Alliance (UK)
UK charity: “Cavernoma Alliance UK (CAUK) is a charity created by people affected by cavernoma – otherwise known as cerebral cavernous malformations (CCM), cavernous haemangioma or cavernous angioma. Our mission is to improve the quality of life for those affected by cavernoma through education, support and promotion of research.”
- Hydrocephalus Association (USA)
An American patients' organization with comprehensive resources for patients, including information in both English and Spanish.
- Tête en l’Air (France)
A French patients’ organization working for and with families whose child is a neurosurgical patient. They aim to accompany, Inform, and raise awareness.
- Epilepsy Action (UK)
Epilepsy Action is the UK’s leading epilepsy organisation and exists to improve the lives of everyone affected by the condition. As a member-led association, we are led by and represent people with epilepsy, their friends, families and healthcare professionals. Epilepsy Action is here to support people every step of the way through living with the condition.
Call: +44 113 210 8800
SPINAL CORD INJURY:
- European Spinal Cord Injury Federation In the autumn of 2005, the organizations representing people living with a spinal cord injury in the different countries in Europe were offered a very special opportunity - to meet in Nottwil, Switzerland, in order to discuss the foundation of a pan-European federation. The founding assembly took place in the spring of 2006. Today ESCIF represents 29 national organisations from 24 European countries
- Association Spina Bifida Belge Francophone (Belgium)
Mission: The Spina Bifida Association Belge Francophone aims to give people with Spina Bifida the opportunity to lead an independent life and respect for their dignity and human rights.
Note: The website is in French only.