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Dravet Europe | Dravet Syndrome European Federation
Dravet Syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and catastrophic form of intractable epilepsy that begins in infancy. Dravet Syndrome European Federation (DSEF) is a non-profit organisation, a federation of European organisations, active in the field of Dravet Syndrome and driven by patients and patients’ caregivers. Together we have built a strong European community of people living with Dravet Syndrome. We are this community’s voice and, directly or indirectly, we fight against the impact of Dravet Syndrome.
Author: DSEF
Home - Dravet Syndrome Foundation
Your Content Goes Here More News Dravet Syndrome Foundation is a non-profit organization dedicated to aggressively raising research funds for Dravet syndrome, a rare and catastrophic form
Author: Admin
Alliance Syndrome de Dravet : association de familles
Alliance Syndrome de Dravet : association de familles d’enfants porteurs de cette une maladie génétique rare provoquant de sévères crises d’épilepsie.
CFZ Syndrome
An international team of researchers has identified genomic mutations for Carey-Fineman-Ziter (CFZS) syndrome, a very rare congenital myopathy (inherited muscle disorder) characterized by **** weakness, a small or retracted chin, a cleft palate and curvature of the spine (scoliosis), among other symptoms. Read More
Rett Syndrome Society of British Columbia : Rett Syndrome Society of BC
Rett Syndrome Rett Syndrome is a unique developmental disorder impacting mainly females and begins to appear in early childhood. Symptoms can include regression in communication skills, motor skills and other health issues. Learn about Rett Syndrome Our Mission Our mission is to support, educate, and empower those that live with Rett Syndrome and their families. […]
Home - CDKL5 Alliance
On Sunday, November 21st, 2021 the CDKL5 Alliance is holding its annual meeting. CDKL5 Deficiency Disorder CDKL5 deficiency is a rare X-linked genetic condition which results in early onset, difficult to control, seizures, and severe neuro-developmental impairment. Due to the location on the X chromosome CDKL5 deficiency affects more girls than it does boys Read…
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