How many people live with ALS worldwideby Roberta Lunghini - 2016.06.21
It is estimated that over 420,000 of the world’s population are living with ALS/MND. And about 6,000 of them are from Italy. Every year the International Alliance of ALS/MND Associations celebrates 21 June as the global day of recognition of ALS/MND – a disease that affects people in every country of the globe. For this occasion a document, which represents the set of rights all Alliance member organisations should adopt and promote as conditions, systems and resources allow, was prepared:
1. People living with ALS/MND have access to highest quality care and treatment available within their healthcare system.
2. People living with ALS/MND have access to information and education that will enable them and their caregivers to play an active role in making decisions about care and support.
3. People living with ALS/MND have choice with respect to:
• health and support workers who are providing treatment or advice
• the place where care takes place and
• the type of treatment or support that is provided. This includes the right to accept, refuse, or discontinue treatment or intervention within the legal framework of one’s own country.
4. People living with ALS/MND have the ability to provide input on the healthcare and support system, including policy-making, care delivery and the implementation of medical research procedures and protocols.
5. People living with ALS/MND have the best quality of life possible, including access to preservation of personal dignity and to humane care, without discrimination.
6. People living with ALS/MND have assurance of confidentiality and privacy regarding their medical records and information.
7. Carers of people living with ALS/MND have access to the highest quality support available, including counseling and bereavement services, respite care and any available government benefits and entitlements.
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