The Association for the fight against Gerstmann Straussler Scheinker’s syndrome was born at the end of 2019, from the will of the sons and relatives of the sick, who experienced first-hand the aggressiveness and violence of this rare disease.
The founding members, as set out in the statute, have decided to become a point of reference for the sick and their families, to support scientific research and to collaborate with every institution or public and private institution, to highlight the results achieved by the scientific research.
The Association also addresses sector operators such as general practitioners and neurologists: the rarity of the disease often makes it unknown. Strengthened by our past experiences of suffering and with an experience gained in the management of the sick and the positive person at the DNA test, we are ready to help you with our loved ones and other sick people. You will never be alone with us; we will always be ready to listen and support you.
The Association has different purposes:
1) Follow scientific research and give visibility to all members and non-members.
2) The Association is fighting to extend the patient's prospect of life; this is possible right now, although we aim to look for other substances that can reduce symptoms and bring the prospect of life to about 15 years in the future.
3) If we are contacted in order to obtain better therapeutic treatments than those in use, simply download the attached file and send it to Presidenza@aigss-it.org; your current state of health will be assessed and based on the response you will give us, you will receive personalized therapy from our neurologists, in order to avoid side effects. All this does not exclude specialist visits for those who wish (see the Our Neuropathologists section).
To help people with disabilities travel more easily between EU countries, the EU is developing a voluntary system of mutual recognition of disability status and some associated benefits based on an EU disability card.
Currently, there is no mutual recognition of disability status between EU Member States, leading to difficulties for people with disabilities, as their national disability cards might not be recognised in other Member States.
The EU disability card ensures equal access to benefits across borders for people with disabilities, mainly in the areas of culture, leisure, sport and transport. The card is mutually recognised between EU countries participating in the system, on a voluntary basis.
A pilot of the card was launched in February 2016 in a group of eight EU countries:
The card does not change national eligibility criteria or rules. Member States retain their discretion to decide who is eligible to receive the Card, using the national definition of disability, and to determine the issuing procedure.
In 2019-2020, the European Commission assessed the pilot project. The assessment study confirmed the EU added value of the card. It enables the mutual recognition of disability status across Member States, which would not have been feasible without EU level intervention. The study also concluded that the implementation costs per Cardholder are low. For service providers, the benefits clearly outweigh the costs of participating. Moreover, the Card addresses the key needs of persons with disabilities in the sectors in scope and there is a growing demand for the Card by persons with disabilities.
The assessment study was published online in 2021.
The new Strategy for the Rights of Persons with Disabilities 2021-2030 announced a follow-up to the initiative.
Flagship initiative: The Commission will propose creating a European Disability Card by end of 2023 with a view to be recognised in all Member States. It will build on the experience of the ongoing EU Disability Card pilot project in eight Member States and upon the European parking card for persons with disabilities.