To enable everyone, everywhere who is affected by PSP|CBD to live the best life possible.
Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD) are terminal neuro-degenerative conditions with a typical life expectancy of 5-7 years following diagnosis. These rare conditions affect approximately 400,000 people around the globe, and currently have no known cure.
In recent years, the interest in PSP|CBD has increased dramatically from both researchers and pharmaceutical companies. Aside from finding a cure for people directly affected by PSP|CBD, it has been identified that the tau protein - which is the cause of both conditions - may also hold the key to unlocking other neurological diseases. Patient advocacy bodies have long been supporting people affected by PSP|CBD at the national level, but have identified that with the increasing global interest in PSP|CBD, there needs to be an international response that will not only protect and benefit patients, but will also enable efficiencies in organisations and researchers who are working on treatments and cures for these conditions.
In June 2019, PSP|CBD associations from Canada, France, Germany, Ireland, Japan, UK and USA met in Raleigh, North Carolina to found PROMOTUS, The PSP|CBD Global Alliance. PROMOTUS’s main objectives are to: represent the views of national PSP|CBD associations, providing a single point of contact for pharmaceutical companies and researchers; provide best practice care and support for people affected by the conditions; encourage research into PSP|CBD and ensure that research outcomes are disseminated around the world; partner pharmaceutical companies and bio-techs to facilitate easier access to patients for clinical trials; and, grow the network of PSP|CBD associations around the world to reach and support more people.
Since founding PROMOTUS, the Alliance has been joined by representatives from Sweden, Australia, India, New Zealand and Argentina.
The combined efforts of these 12 associations working as a single international body will deliver an increased focus into PSP|CBD research, providing real hope for people affected by these devastating conditions.
To facilitate the development of effective PSP|CBD associations across the globe
To collaborate with Alliance members in providing best practice guidance on care and support through the exchange of data, information and advice
To foster and guide international research programmes into treatments for PSP|CBD
To provide a global network of PSP|CBD associations, speaking with a single voice
To improve the quality of information and support materials for the global PSP|CBD community
To raise standards of care for people affected by PSP|CBD
To advance research programmes, sharing and distributing research outcomes
To be the global partner of organisations working to find treatments and a cure for PSP|CBD
To promote the distribution and exchange of educational materials and data to raise awareness of PSP|CBD internationally