CDKL5 Germany was founded in 2015 with the aim to bring together families and to collect donations for CDKL5 research. Our annual meetings as well as our social media platforms help to exchange experience and to provide support.
Our mission is to federate Francophone families affected by the CDKL5 disorder in order to provide them with moral support, useful information on the disease, to encourage exchanges between them and to accompany them at each stage of the disease (from diagnosis to transition to adulthood ). Encourage research, subsidize it by mobilizing private or public funding, and participate by working with European and international organizations. Raise public awareness about the CDKL5 disorder and its therapies to ensure better management of patients, both on the administrative, medical and social aspects and allow a faster diagnosis.
The cure will come only thanks to the research that, as we have learned early, has very high costs. Our main purpose is to find funds to support research. In addition to dedicating ourselves to fundraising, we try to create a network between website, youtube channel, Facebook, Twitter and newsletter that will involve all those who have approached our cause. Above all, we try to support families struggling at the forefront of this disease.
The foundation raises awareness by networking and attending worldwide events, as well as regularly family events which bring together clinical and scientific communities to support parents and their families. They also provide financial assistance to families who may need to access to equipment to make life a little easier.
Mission statement 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.
To support the health and physical development of people with special needs as well as those with any physical or mental disability, or people with genetic, oncological or other serious diseases.
To help CDKL5 patients and their families simplify the stressful road and provide them with useful information.
Raise awareness of the CDKL5 Deficency Disorder in our country.
Fundraising to provide support and improve the quality of life of affected children and their families.
Promote and financially support CDKL5 research projects.
Promote and support the training of professionals related to CDKL5 Deficency Disorder.
Support and participate in international cooperation programs.
The goal is to make a difference in the lives of children who are needing a voice and the help of others to find a cure. We need your help in being that voice for Harper and others with CDKL5! Your support is greatly appreciated and we ask that you keep Harper and her friends in your daily prayers, continue to follow her progress and the progress of the CDKL5 Seizure Research Project, as well as, share her story.
The IFCR was founded by a group of parents, in 2009, to treat and cure CDKL5 Deficiency Disorder (CDD). We do this through funding of basic, translational, and clinical research, while supporting all affected to thrive by inspiring, educating, and advocating in a variety of communities.
Rett UK is the only UK charity which provides professional support to people living with Rett syndrome across the UK.
Rett UK was founded in 1985 round a kitchen table by Yvonne Milne MBE. Since then we have grown to be the leading provider of information to not only families but also medical professionals new to the world of Rett syndrome.