Association Xtraordinaire
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Paris, Île-de-France, France
130 abonnés
101 relations
Paris, Île-de-France, France
130 abonnés
101 relations
À propos
L'Association Xtraordinaire est une association française à but non lucratif qui regroupe des familles touchées par une maladie génétique rare avec des troubles du neurodéveloppement liés au chromosome X.
Association Xtraordinaire is a French based non-profit organization for families and patients affected by rare X-linked Syndromes with neuro-developmental disorders.
plus d'informations sur notre site / more informations on our website
www.xtraordinaire.org
Articles de Association
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Symposium DTC Sept 2023 - CTD/CCDS Symposium Sept 2023
Symposium DTC Sept 2023 - CTD/CCDS Symposium Sept 2023
les videos sont disponibles / videos are on line https://www.youtube.
Activité
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L'Xaltante, pour un sport solidaire, festif et ECO RESPONSABLE 🏃♀️🌍🍀🌱 Quand le sport est une occasion de s’ouvrir à l’autre, de prendre soin de…
L'Xaltante, pour un sport solidaire, festif et ECO RESPONSABLE 🏃♀️🌍🍀🌱 Quand le sport est une occasion de s’ouvrir à l’autre, de prendre soin de…
Aimé par Association Xtraordinaire
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In Session 4: Biomarkers and Endpoints, Dr. Miller (Children's Hospital of Philadelphia) is sharing final results from the Vigilan study! You’ll be…
In Session 4: Biomarkers and Endpoints, Dr. Miller (Children's Hospital of Philadelphia) is sharing final results from the Vigilan study! You’ll be…
Aimé par Association Xtraordinaire
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We have some special sessions this year! Today at 4:15 pm MT we are hearing from Aurore Curie (Université Claude Bernard Lyon 1) on what has been…
We have some special sessions this year! Today at 4:15 pm MT we are hearing from Aurore Curie (Université Claude Bernard Lyon 1) on what has been…
Aimé par Association Xtraordinaire
Expérience
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Association de patients / Patients Association
Association Xtraordinaire
Plus d’activités de Association
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A great session yesterday with Aurore Curie presenting the results of “the CREAT Creatine study” And myself “getting ready for the clinical trials /…
A great session yesterday with Aurore Curie presenting the results of “the CREAT Creatine study” And myself “getting ready for the clinical trials /…
Aimé par Association Xtraordinaire
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Xtraordinaire was presenting at the CCDS Scientific Symposium in Salt Lake City
Xtraordinaire was presenting at the CCDS Scientific Symposium in Salt Lake City
Partagé par Association Xtraordinaire
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Session 2: Biology of Cerebral Creatine Deficiencies begins soon! We’re excited to hear from Matt Skelton, Alex Lee, and Steve Baker on the CCDS…
Session 2: Biology of Cerebral Creatine Deficiencies begins soon! We’re excited to hear from Matt Skelton, Alex Lee, and Steve Baker on the CCDS…
Aimé par Association Xtraordinaire
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CCDS Day 1 - session 3 : Advances in therapeutic development for CCDS Ceres Brain Therapeutics : CBT1, an innovative patented drug to address…
CCDS Day 1 - session 3 : Advances in therapeutic development for CCDS Ceres Brain Therapeutics : CBT1, an innovative patented drug to address…
Aimé par Association Xtraordinaire
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Session 5 of the CCDS Symposium is all about Gene Therapy Approaches for CCDS!! Hear from these 4 speakers on how the field of CCDS gene therapy is…
Session 5 of the CCDS Symposium is all about Gene Therapy Approaches for CCDS!! Hear from these 4 speakers on how the field of CCDS gene therapy is…
Aimé par Association Xtraordinaire
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CCDS scientific symposium. Day 2 Aloïse Mabondzo. Very interesting presentation and data’s on human organoids and CBT101, and identification of…
CCDS scientific symposium. Day 2 Aloïse Mabondzo. Very interesting presentation and data’s on human organoids and CBT101, and identification of…
Aimé par Association Xtraordinaire
