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Video #2 – What is the role of each member of the Prof Canaud ‘s team ?

COSY is a joint initiative of 11 partners, comprising two hospitals (Necker – Enfants Malades – AP HP and Hôpital Mère Enfant – HCL), 6 research groups (including hospital-university instituts (Instituts Hospitalo- Universitaires (IHUs), 3 industrial partners and one patient association. It combines all the necessary skills to propose innovative tools in physiopathology, genetics, imaging and care reorganization.

We invite you to open the doors of the laboratory to discover the role of the members of Professor Guillaume Canaud’s team.

In this first vidéo, you’ll discover :

Clément Hoguin, Technician
Charles Bayard, Ingénieur d’étude
Lola Zerbib, Doctorant
Dr Quitterie Venot, PhD (Postdoc)

Next interviews will be in english.

For more information : https://rhu-cosy.com

 

“Rare diseases” session at the National Academy of Pharmacy

The 2nd edition of the TOR de France will be held on October 14 and 15, 2021 at the Hotel Le Saint Paul – 29 Bd Franck Pilatte, 06300 Nice.

Currently “TOR de France” is a unique conference series in the world entirely devoted to field of “Target Of Rapamycin” signaling, nutrition, growth, metabolism, development. The “TOR de France” meeting gathers students, postdocs, research group leaders and medical doctors working on various aspects of TOR biology and the applications in medicine, pharmacology, human health.

Pr Guillaume Canaud will be one of the speakers on Friday 15 octobre à 11h30 in the Session 4 : mTOR, development and rare diseases.

Website : https://www.tor-de-france.fr

“Rare diseases” session at the National Academy of Pharmacy








We invite you to follow the thematic session “Rare Diseases” Wednesday, September 29, 2021, 2:00 pm to 5:00 pm.
The objective is to organize the care of rare diseases from diagnosis to treatment, emphasizing the role of research.
Prof. Guillaume Canaud will be one of the speakers.
Download the program by clicking here.
Faculty of Pharmacy of Paris, Salle des Actes.
For people outside the AnP, the session will be broadcast via Youtube by clicking on the following link: https://youtu.be/r4drvbJ4kn8.

Video – What is the role of Integragen within the RHU-COZY?




COSY is a joint initiative of 11 partners, comprising two hospitals (Necker – Enfants Malades – AP HP and Hôpital Mère Enfant – HCL), 6 research groups (including hospital-university instituts (Instituts Hospitalo- Universitaires (IHUs), 3 industrial partners and one patient association. It combines all the necessary skills to propose innovative tools in physiopathology, genetics, imaging and care reorganization.

French interview with Séverine Martin-Lannerée, Senior Genomics Scientist and Steven Blanchard, bioinformatics engineer of Integragen

 

Project FAVA

Project FAVA is a non-profit patient advocacy group that promotes awareness of fibro-adipose vascular anomalies, educates patients, their families, and the global community, and provides helpful resources to those with FAVA. They also work with scientists, medical providers, and pharmaceutical companies to advance research and move the needle towards more effective and less invasive treatment options.

Visit Project FAVA’s website and sign up (https://www.projectfava.org/join-now) to stay on top of the latest news and breakthroughs in FAVA care.

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The Prize “Gagna A. & Ch. Van Heck Prize for Incurable Diseases” has been awarded to Prof. Guillaume CANAUD

This Prize, amounting to 75.000 €, is a triennial and international Prize, granted by “Fonds de la Recherche Scientifique – FNRS” (F.R.S.-FNRS) to reward a scientist or a medical doctor, in recognition of a research work which has contributed to the treatment of a disease currently incurable, or which has raised hopes for curing the disease.

The 2021 Prize was awarded to Prof. Guillaume Canaud of the Necker Hospital, University of Paris, for his contributions to the therapeutic treatment of PIK3CA-related overgrowth spectrum (PROS), which includes a broad range of rare disorders caused by a PIK3CA mutation.

Objectives, progress and highlights of the COZY project in 2020

The overall aim of the COSY project is to improve the medical care of patients with overgrowth syndromes. To this end, we intend to improve the genetic diagnosis; identify new genes involved; understand how the disease develops and progresses; identify new therapeutic targets; improve patient care (one-day-care concept); develop new imaging tools to improve patient’s follow-up; increase awareness of these syndromes within the medical community and promote a better patient integration through dissemination in appropriate communication channels.

The project started nearly at the same time as the global COVID-19 pandemic, however, it did not impact our motivation, and we have been able to move forward despite the international context. In fact, we have identified new genes in OS patients, and we are currently trying to demonstrate their contribution to the development of these syndromes. We have also made progress in understanding the molecular mechanisms of these syndromes, about which several scientific publications will be published soon. A new tool to assess patient bone abnormalities will be delivered later this year as well as new modalities for imaging analysis.

Finally, our hospital care level improved through an increasingly smoother patient journey. This first year allowed us to lay the foundations of our project.

The coming year shall see several deliverables being reached. To be continued!

Call for research projects: “Human and social sciences & rare diseases”

The Foundation for Rare Diseases is launching its 9th call for research projects: “Human and social sciences & rare diseases”.

As part of the Foundation’s participation in the RHU project ‘COSY’, 4 projects addressing the challenges of patients affected by Overgrowth Syndromes (OS) will be supported for up to 12 months and with a maximum budget of €20,000.

All projects should formulate a research question, the benefits of which being transposable to other pathologies, involving at least a research team in Humanities and Social Sciences (HSS), a medical team specialized in rare diseases and a patient advocacy group. Finally, the bearer must be an expert in the HSS field. All rare diseases of children and adults are concerned.

Click here to find more about this projects call: https://fondation-maladiesrares.org/wp-content/uploads/2021/05/SHS9-Call.pdf