Rett like syndrome
Mission: To Fund clinical and therapeutic research, to raise awareness of CDKL5 Disorder, and provide support, inspiration and education to families, while developing treatments and standards of care to help improve lives now for those living with the CDKL5 condition.
Vision: We understand that hope is at the core of what we do, but without a plan, it is just a wish. We have a collaborative and cohesive plan that will help change lives now for the better!
Hope rises when people rise!Disease Support Organization Last Updated: 23 Mar 2020
Rett UK is a national charity dedicated to supporting and empowering people with Rett syndrome and their families.
Our strategic aims are to …
• provide professional family-support services, activities and events at a local, regional and national level
• educate health, social care and education professionals about Rett syndrome to enable quicker diagnosis and improved standards of care throughout the UK
• advocate for people with Rett syndrome to be given the support and resources needed to be active communicators
• promote, support and encourage research into new therapies and treatmentsDisease Support Organization Last Updated: 23 Mar 2020
The Foundation for Women & Girls with Blood Disorders works to ensure all women and girls with blood disorders are correctly diagnosed and optimally managed at every life stage.
Raises awareness and educates key healthcare professionals
Translates and disseminates information and research
Nurtures future healthcare leaders
Fosters collaboration and generates knowledge among core disciplinesDisease Support Organization Last Updated: 11 Mar 2020
A UK Charity, set up to promote relief, care and services and to promote health for persons suffering from and affected by CDKL5. Registered Charity No. 1149099
Money raised for CDKL5 UK will be put to our key aims which are to promote relief, care and services to promote health, for persons suffering from and affected by CDKL5, in particular by:
Funding research worldwide for treating the symptoms, including epilepsy and research into the genetic cause of CDKL5 and disseminating or publishing the useful results of such research for the benefit of the public.Disease Support Organization Last Updated: 30 Jan 2019
To lead the way in finding a cure and treatments for CDKL5 disorder by funding global research efforts and increasing awareness while enhancing the quality of life for those affected by CDKL5 disorder, by providing information, programs, and services.Disease Support Organization Last Updated: 30 Jan 2019