CDKL5 Members

Our CDKL5 Alliance members from all over the world. United in one goal to support families living with CDKL5 deficiency. Some are also funding for research and providing clinical support, but those are aren’t have regular family meetings to share knowledge, come together and provide a platform for families with link with clinical and scientific professionals.

CDKL5 Austria

To support families by attending global events and sharing information gained with other parents.

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CDKL5 Canada

To pursue research into finding a cure and treatments for CDKL5 disorder and to raise public awareness of the disorder, while providing support to those affected by CDKL5 in Canada.

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CDKL5 Ireland

To support families, raise awareness and support research by fundraising for project internationally.

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CDKL5 Italy

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.

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CDKL5 Japan

Supporting families through attending global events, and organising regular family meetings. Supporting other counties in Asia to collaborate and create their own CDKLK5 associations.

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CDKL5 Research Collaborative

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.

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Hope For Harper

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.

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CDKL5 Francophone

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.

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CDKL5 Deutschland

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.

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CDKL5 Nederland

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.

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CDKL5 Slovakia

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.

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CDKL5 UK

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. Supporting participation into clinical trials relevant to treating the symptoms of, or development of a cure for, CDKL5, or participation in clinical trials for similar Rett-Like disorders and Rett Syndrome. Raising public awareness of CDKL5 and promoting a greater understanding of the condition within the general public and the medical and social professions.

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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.

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Loulou Foundation

Advancing research into the understanding and development of therapeutics for CDKL5 deficiency disorder.

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CDKL5 Spain

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.

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CDKL5 Georgia

CDKL5 Georgia – this is parent’s organization that has united 5 families with 5 amazing children, 1 boy and 4 girls.

Our organization was established in January 2019, and since that day, we have hope for our children’s future. We found, empowered and learned so much from each other. Before finding each other we all had to deal with so much problems alone.

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CDKL5 Russia

CDKL5 Russia Association was founded in 2019 by the producer and mother of a CDKL5 child, Maria Ivanova.

The first meeting of the Association took place in January 2019 in Moscow – more than 18 families from 12 cities of Russia attended it. Now there are about 45 families in the Association.

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CDKL5 China was established in September 2019 by CDKL5 patients and related scientists. Its purpose is to establish a communication platform for doctors, scientists and CDKL5 parents, popularize CDKL5 related knowledge, and share latest progress in CDKL5 research; increase social awareness of CDKL5 rare diseases, strive for social and policy support, and provide assistance to families; promote the progress of CDKL5 related medical.