25 October // For the second time in history, all around the world many IF members, foundations and NGOs organise events to mark the World Spina Bifida Day.
Activities that we know of vary from conferences, workshops, marathons, awareness weeks to concerts and gatherings for the families. Have a look at the events happening in your country: www.worldspinabifidahydrocephalusday.com
In Bulgaria for example LUMOS and IF coorganise a workshop on the "Treatment and Experiences of Children with Hydrocephalus in Bulgaria and their Families". The second day will be fully focused on building the capacity of parents organisations to campaign and raise awareness of hydrocephalus treatment and related issues.
The World Spina Bifida day in Uganda will be celebrated at regional level by IFs partners in Kampala, Gulu, Mbarara, and Mbale. The parents support groups working together with the SHIP coordinators will organize activities in their sites. In Kampala in the central region, radio spots will be run on the local radio stations and a talk show will be held to sensitize the public on SBH and share experiences of parents and youth.
Raising public awareness and making issues faced by people with Spina Bifida and Hydrocephalus more visible are the aim behind this initiative created by IF's General Assembly in Guatemala 2011.
Good luck and have fun!
24 October // The Cross-border healthcare directive enters into force in the whole European Union on 25 October 2013. This directive offers EU patients the right to seek healthcare, to which they are entitled in their own country, in any other EU country. This applies equally to medicinal products and medical devices where these are provided in the context of a health service. Member States are free to decide upon the reimbursement of costs of cross-border healthcare beyond these limits. Prior authorisations for cross-border healthcare will become the exception rather than the rule. Eventually, the Directive will provide for the development of European reference networks, to encourage the pooling of knowledge and maximise the cost effective use of resources in highly specialized healthcare, such as the diagnosis and treatment of rare diseases. Read more in the Health-EU newsletter 117.
18 October // It’s our year- European Year of citizens. We need to seize the moment and make sure that the voice of all citizens is equally heard. Especially the voice of those who are not yet fully able to be actively involved and included in society. What does active citizenship mean for a person with a disability? What are constraints and why is the access to healthcare so important? On 15 October, under the patronage of MEP Diane Dodds and on the initiative of the International Federation for Spina Bifida and Hydrocephalus (IF) seven organisations working for the promotion of the rights of people with disabilities gathered in the European Parliament to debate about the accessibility of healthcare.