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Topic on Focus on Sickle Cell Disease for Patients and their Families

ERN-EuroBloodNet Topic on Focus on Sickle Cell Disease (SCD) for patients and their families aims to disseminate very important topics related to SCD to the patient community and their families: the latest advances in treatment and diagnosis, improving the quality of life in the field of this rare red blood cell disease.

The 11 Topics of this program have been chosen by people living from SCD answering the ERN-EuroBloodNet Survey on Prioritization of Educational Needs.

PROGRAM

  • A set of 11 webinars targeting patients and their families.
  • 30/40 min of presentation and 15/20 minutes of questions from attendees
  • European experts in the field will provide Webinars.
  • Once per month, every Monday 5 pm - 6 pm (Paris CET).
  • The following webinars will be held starting from January 2022 :
  • New therapies for SCD

         Date: 31thJanuary 2022 

         Speaker: Malika Benkerrou (AP-HP Hospital Saint-Louis, Paris)

  • Adult Patients Quality of Life

         Date: 14th February 2022

         Speaker: Noémi Roy, (Oxford University Hospitals NHS Foundation Trust)

  • Hydroxyurea and fertility

         Date: 14th March 2022

         Speaker: Mariane de Montalembert, (AP-HP Hospital Necker, Paris)

  • Neurological Damages in SCD

         Date: 4th April 2022

         Speaker: Raffaella Colombatti, (AOU Padova) 

  • Neonatal Screening

         Date: 9th May 2022

         Speaker: Béatrice Gulbis, (ULB Hôpital Erasme, Bruxelles)

  • Gestational Risk

         Date: 6th June 2022

         Speaker: Laure Joseph, (AP-HP Hospital Necker, Paris)

  • SCD and immune disease

         Date: 4th July

         Speaker: Slimane Allali, (AP-HP Hospital Necker, Paris)

  • Genetic Counselling and embryo selection

         Date: 26th September 2022 

         Speaker: Celeste Bento, (Centro Hospitalar e Universitário de Coimbra, EPE)

  • BMT: survival infertility and other complications

         Date: 17th October

         Speaker: Subarna Chakravorty, (King's College Hospital NHS Foundation Trust)

  • Polyuria and Enuresis: kidney damages

         Date: 14th November 2022

         Speaker: David Rees, (King's College Hospital NHS Foundation Trust)

  • Priapism       

         Date: 5th December 2022

         Speaker: Rachel Kesse Adu, Guy's and St Thomas' NHS Foundation Trust

FULL PROGRAM IS OPEN!

Register to the full program
Past webinars

Upcoming webinars

Check below the upcoming webinars and register!

Gestational Risk

06/06/2022 17:00
Speakers: Laure Joseph
Target: Patients
Subnetworks: Red blood cell defects
Disease Groups: Sickle cell disorders
Register

Priapism

05/12/2022 17:00
Speakers: Rechel Kesse Adu
Target: Patients
Subnetworks: Red blood cell defects
Disease Groups: Sickle cell disorders
Register