The disease CACH (Childhood Ataxia with Central Nervous System Hypomyelination) is a rare genetic disease of the hypomyelinating leukodystrophy family, also known as leukoencephalopathy with vanishing white matter (VWM). It is characterised by a progressive degradation of the white matter in the brain, leading to various cognitive disorders and muscleRead More →
The United Leukodystrophy Foundation (ULF) in the United States, in partnership with ELA International, organizes the Unlock CTX virtual meeting focused on the leukodystrophy cerebrotendinous xanthomatosis CTX, under the US Food and Drug Administration’s (FDA) Patient-Focus Drug Development (PFDD) program. It will take place on September 14, 2021 in theRead More →
Every year, ELA organizes a meeting in Paris which brings families and researchers together affected by leukodystrophies. This event could not take place in 2020 due to the global pandemic. The health context having made it impossible to organize the Families/Researchers meeting in person, ELA has had to adapt toRead More →
Every week in Europe 20 to 40 children are born with a form of rare disease called leukodystrophy that attacks and destroys the central nervous system (brain and spinal cord) in children and adults. But research is improving thanks to a € 26 200 donation made in 2018 to theRead More →
Call for proposals ELA 2021 ELA International represents national ELA associations from different countries that contribute together to the financing of research on leukodystrophies. It is run by parents and /or patients affected by leukodystrophies. Accordingly, ELA International wishes to focus funding on programs devoted to the improvement of theRead More →
Study on the quality of life of women affected by X-linked adrenoleukodystrophy [ALD] A new study is available on Leuconnect! In partnership with ELA International and under the responsibility of Professor Wolfgang Koehler in Germany, the team from the University of Leipzig is opening a study on the quality ofRead More →
A grant funded by ELA International: a new finding in zebrafish could help us better understand how leukodystrophies develop. Leukodystrophies are rare genetic neurological diseases affecting the white matter of the brain, the myelin. They result in the loss of all vital functions and cause serious physical and mental disabilitiesRead More →
ELA families need our support Today, ELA families are fighting a double battle: coping with the disease affecting their children and protecting them from the Covid-19. In addition to the constraints of increased confinement at home, there is the added burden of daily care and the anxiety of the futureRead More →
World experts on leukodystrophies brought together by ELA International to advance research. ELA International has brought together about thirty eminent researchers from different countries (United States, Italy, Spain, United Kingdom, Germany, Holland, France,etc.) to enrich their mutual approaches to leukodystrophies (degenerative brain diseases which affect 20 to 40 births perRead More →
Leuconnect multilingual Already accessible in French and English, the Leuconnect platform is now open in 3 new languages. With the financial support of the Roche Foundation, it is now available in Spanish, Italian and German. The members of the different ELA branches (Spain, Italy and Germany) share information with theirRead More →
