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The Champ Foundation The Champ Foundation supports research toward better treatment and a cure for single large-scale mitochondrial deletion syndromes (SLSMDS), like Pearson syndrome
About the CFR | CFR. thechampfoundation. org In 2020, The Champ Foundation launched the Champ Foundation Registry (CFR) to provide a robust, accessible dataset to families, researchers, clinicians, and companies fighting single large-scale mitochondrial DNA deletion (SLSMD) disorders
The Champ Foundation Register for the Champ Foundation Registry (CFR) If you or your child is affected by a single large-scale mitochondrial DNA deletion (SLSMD) disorder, like Pearson syndrome, KSS, or CPEO, you have the knowledge and power to advance research by your voluntary participation in the CFR
For Researchers | CFR. thechampfoundation. org The Champ Foundation Registry (CFR) aggregates data from patient-reported outcomes, medical records, and biospecimens to form a more complete picture of individuals with single large-scale mitochondrial DNA deletion (SLSMD) disorders, like Pearson syndrome, Kearns-Sayre syndrome (KSS), and CPEO
Apply for Data | CFR. thechampfoundation. org The Champ Foundation aims to provide its resources readily, meaning that we will work with any investigator, at any institution, anywhere in the world who is conducting valid research that is in alignment to our mission of finding treatment and a cure for SLSMD disorders like Pearson syndrome
What is the Champ Foundation Registry (CFR)? What is the Champ Foundation Registry (CFR)? The CFR is a research study to investigate single large-scale mitochondrial DNA deletion (SLSMD) disorders, such as Pearson syndrome, Kearns-Sayre syndrome, and CPEO To our knowledge, it is the only registry in the world that aims to gather data specifically on individuals affected by SLSMD disorders
Diagnostic récent de syndrome de Pearson - The Champ Foundation C'est le seul espoir pour les enfants souffrant de cette maladie invalidante Si vous souhaitez vous investir au sein de The Champ Foundation afin d'aider à trouver de nouvelles approches thérapeutiques pour traiter cette maladie, veuillez nous contacter à l'adresse contact@thechampfoundation org
Newly diagnosed with Pearson Syndrome These recommendations were reviewed and updated in February 2023 by members of The Champ Foundation’s Science Advisory Board These guidelines do not substitute for medical advice and all interventions should be approved and decided by your child’s doctors