Category: Updates

  • Trials for the new antisense oligonucleotide drug by Biogen.

    Trials for the new antisense oligonucleotide drug by Biogen.

    Trials are taking place for the new antisense oligonucleotide drug by Biogen. Similar to Spinraza, but believed to have a better stability in the human body. This means larger dose can be administered through spinal tap at longer intervals compared to Spinraza. We believe they are aiming for every 180 days but yet to be…

  • Have you heard of the Disability Law Service?

    Have you heard of the Disability Law Service?

    Disability Law Service provides free legal advice on community care, employment, housing and welfare benefits to people with disabilities and their carers to ensure that they have access to their rights and justice. The charity aim to respond to enquiries within 3-5 working days. Please see the dropdown menus ‘Our Services’ on the link at…

  • PROPOSAL FOR THE INCLUSION OF RISDIPLAM IN THE WHO MODEL LIST OF ESSENTIAL MEDICINES FOR THE TREATMENT OF SPINAL MUSCULAR ATROPHY

    PROPOSAL FOR THE INCLUSION OF RISDIPLAM IN THE WHO MODEL LIST OF ESSENTIAL MEDICINES FOR THE TREATMENT OF SPINAL MUSCULAR ATROPHY

    World health organisation WHO, maintains a Model Lists of Essential Medicines which serve as a guide for the development and updating of national and institutional essential medicine lists to support the procurement and supply of medicines in the public sector, medicines reimbursement schemes, medicine donations, and local medicine production. A special committee meets every two…

  • Have you heard of the Disability Law Service?

    Have you heard of the Disability Law Service?

    Disability Law Service provides free legal advice on community care, employment, housing and welfare benefits to people with disabilities and their carers to ensure that they have access to their rights and justice. The charity aim to respond to enquiries within 3-5 working days. Please see the dropdown menus ‘Our Services’ on the link at…

  • PROPOSAL FOR THE INCLUSION OF RISDIPLAM IN THE WHO MODEL LIST OF ESSENTIAL MEDICINES FOR THE TREATMENT OF SPINAL MUSCULAR ATROPHY

    PROPOSAL FOR THE INCLUSION OF RISDIPLAM IN THE WHO MODEL LIST OF ESSENTIAL MEDICINES FOR THE TREATMENT OF SPINAL MUSCULAR ATROPHY

    World health organisation WHO, maintains a Model Lists of Essential Medicines which serve as a guide for the development and updating of national and institutional essential medicine lists to support the procurement and supply of medicines in the public sector, medicines reimbursement schemes, medicine donations, and local medicine production. A special committee meets every two…

  • Finding your nearest Hydrotherapy Pool

    Finding your nearest Hydrotherapy Pool

    Swimming is a low-impact form of exercise suitable for people with SMA, as it supports peoples body weight and reduces the strain on weakened muscles and joints. This low-impact nature allows individuals with SMA to improve their overall strength and endurance without the risk of injury. Water buoyancy also helps improve muscle control, balance, and…

  • Finding your nearest Hydrotherapy Pool

    Finding your nearest Hydrotherapy Pool

    Swimming is a low-impact form of exercise suitable for people with SMA, as it supports peoples body weight and reduces the strain on weakened muscles and joints. This low-impact nature allows individuals with SMA to improve their overall strength and endurance without the risk of injury. Water buoyancy also helps improve muscle control, balance, and…

  • Disability Expo Event

    Disability Expo Event

    Register for free to go to the Disability Expo Event at 6th to 7th July 2023 at the Excel London. Gain entry to this two-day event for people with lived experience of disability. View hundreds of exhibitors showcasing the latest innovations in independent living, mobility aids/technologies, services and advice from charities/organisations. View the guest speakers…