News and Updates 

ADVOCACY & EMPOWERMENT: February 13th @ 11:00 AM 

GUEST SPEAKER: Stephannie Star

talking about Subutex - Endari, therapies and sharing her knowledge and experiences about them

Click Here to Register for the AEP session

Advocacy & Empowerment Session

February 13th, 2021 11 AM PST

 

 

  • Do you know anyone or does someone in your family have
    Sickle Cell Disease (SCD)?

  • Are you a caregiver or advocate?

 

This is the program for you!​

 

Welcome

 

The Advocacy and Empowerment Program is created for all stakeholders: clients & families, caregivers, medical students, medical professionals and advocates. It is designed to explore advocacy and educate to be empowered. 

 

The Advocacy and Empowerment Program consists of 3 one hour workshops designed to empower attendees with core educational content on SCD (Sickle Cell Disease) and the exploration of self-advocacy.

 

Further into the session is the implementation of the educational content learned, with journaling, role playing, and discussions pertaining to real-world experiences.

 

There will be a variety of presenters’ clients, nurses, physicians, medical professionals and business professionals sharing and discussing important issues that affect the sickle cell community. It is SCAA's hope that these sessions will help to create a clearer understanding of all the stakeholders' roles as we develop a better perception.

 

*Upon completion of 5 or more sessions you will receive a Health & Wellness Bag, Hertz Nazaire T-shirt & Coloring Books

 

 Due to COVID-19 all of the sessions will be conducted thru Zoom video conference until such time we can meet in person. The sign on information will be sent to you through Evite. You will also receive a recording of the zoom session. 

Click Here to Register for the AEP session

Upcoming Advocacy and Empowerment Sessions

 

March 6th - Dr. Carolyn Rowley of Cayenne Wellness 

     Topic: Health & Wellness

 

April 10th - Kim Major

     Topic: Transition from Pedi to Adult Care

Lonza to Produce Aruvant’s ARU-1801 for Pivotal Trial

 

A recent manufacturing agreement between Aruvant Sciences and Lonza will advance the development of ARU-1801, an investigational gene therapy for the treatment of sickle cell disease (SCD). Under the agreement, Lonza will be responsible for producing Aruvant’s gene therapy for an upcoming pivotal clinical trial. The company already has begun transferring manufacturing activities to establish a robust production of ARU-1801.

 
Read More

EMA Reviews Oxbryta: Therapy Would Be 1st in EU Targeting SCD Root Cause

 

The European Medicines Agency (EMA) is reviewing an application from Global Blood Therapeutics (GBT) that seeks full marketing approval for the oral therapy Oxbryta (voxelotor) for people with sickle cell disease (SCD), ages 12 and up.

Oxbryta would be the first treatment targeting the root cause of SCD, hemolytic anemia, to be approved in the EU.

 
Read More

Even During Sickle Cell Crises, I Avoidg the Hospital Due to the Pandemic

 

“Our developers and advisers believe that rapid, noninvasive, ultra low-cost diagnostics will enable entire communities to be screened, helping to eliminate malaria and to diagnose children with sickle cell disease and anemia early enough to get them started on treatments before they become seriously ill,” Patti White, Hemex CEO

 
Read More

https://www.scaasf.org/

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