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4e journées des neutropénies (4th French National Neutropenia Days)
4e journées des neutropénies (4th French National Neutropenia Days)

יום ו׳, 24 במרץ

|

Paris

4e journées des neutropénies (4th French National Neutropenia Days)

Nous vous invitons aux 4e journées des neutropénies qui se tiendront les vendredi 24 et samedi 25 mars prochain.

Registration is closed
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זמן ומיקום

24 במרץ 2023, 9:00 – 16:00 GMT‎+1‎

Paris, Paris, France

פרטי האירוע

Nous vous invitons aux 4e journées des neutropénies qui se tiendront  les vendredi 24 et samedi 25 mars prochain.

Le vendredi est une journée professionnelle, orientée sur des échanges entre médecins et chercheurs, mais complètement ouvertes aux familles et aux patients.

Le samedi est une journée famille et patients, avec des tables rondes, des discussions.

En particulier, l’après-midi sera organisée avec 2 groupes de paroles, un spécifique à la maladie de Shwachman, un autre plus large consacré à la prise en charge de toutes les neutropénies chroniques.

La journée patient sera accessible à distance via un lien zoom, même si nous privilégions cette année, le ‘présentiel’. Le lien zoom sera adressé aux inscrits.

Il n’est pas prévu de participations aux frais, mais pensez à vous inscrire pour qu’on puisse organiser la logistique.

We invite you to the 4th Neutropenia Days which will be held on Friday 24 and Saturday 25 March.

Friday is a professional day, focused on discussions between doctors and researchers, but completely open to families and patients.

Saturday is a family and patient day, with round tables and discussions.

In particular, the afternoon will be organized with 2 discussion groups, one specific to Shwachman's disease, another broader devoted to the management of all chronic neutropenia.

The patient day will be accessible remotely via a zoom link, even if we prefer this year, the 'face-to-face'. The zoom link will be sent to registrants.

There is no participation in the costs, but remember to register so that we can organize the logistics.

שיתוף

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Shwachman-Diamond Syndrome Alliance Inc.

Social:

Email: connect@SDSAlliance.org

Phone: +1-617-329-1838

Mail: PO Box 2441, Woburn, MA 01888

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The Shwachman-Diamond Syndrome Alliance (SDS Alliance) is a 501(c)(3) nonprofit organization dedicated to building a world where Shwachman-Diamond Syndrome (SDS) is a manageable condition and all patients and their families can thrive - through driving research and engaging in advocacy and education.

 

The SDS Alliance brings together patient families, researchers, clinicians, and other diverse stakeholders to better understand, diagnose, and treat this devastating cancer predisposition genetic disorder. The SDS Alliance was launched in 2020 by the parents of a child with SDS, who are biomedical researchers and entrepreneurs.

 

The SDS Alliance’s leadership and scientific & medical advisors are experienced clinicians and researchers focused on combining the patient-family perspective with solutions based on the best available scientific evidence.

 

Families from around the world are fundamental to accelerating the SDS Alliance’s mission to improve outcomes for all SDS patients, especially populations from diverse backgrounds who don’t have possible stem-cell donor matches. The SDS Alliance intentionally elevates the voices of individuals from diverse backgrounds, the LGBTQ+ community, people with disabilities, and marginalized groups, as they bring critical insight and advance the SDS Alliance’s mission.

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