To commemorate Sickle Cell Awareness Month 2019, this September the National Heart, Lung, and Blood Institute (NHLBI) and partner agencies and institutions will host Sickle Cell Science: Path to Progress, a four-part webinar series that will discuss genetic therapies, progress in pain management, bone marrow transplants and other therapies, and implementation efforts in the U.S. and worldwide.

Every Wednesday in September, the webinar presenters will address some of the educational and informational needs expressed by patients, family members, researchers, health care providers, and others in the the sickle cell disease community.

Follow the conversation on Twitter using #ScienceofSCD.

NOTICE that you would need to register to EACH webinar separately. There is no option to register for all webinars at once. You will receive separate access information for each webinar.

Schedule of Events
NOTE: For more information about each webinar visit NHLBI's website.

Title: Serving the Sickle Cell Disease Community Here and Abroad
Date: Wednesday, September 4, 2019

Time: 1:00 - 2:00 PM, Eastern Time

Title: Genetic Therapies in Sickle Cell Disease
Date: Wednesday, September 11, 2019

Time: 1:00 - 2:00 PM, Eastern Time

Title: Bone Marrow Transplants, Other Therapies, and Sickle Cell Disease
Date: Wednesday, September 18, 2019

Time: 1:00 - 2:00 PM, Eastern Time

Title: Sickle Cell Disease Care in the Emergency Department: Improvement Initiatives and Ongoing Research — CME Available*
Date: Wednesday, September 25, 2019

Time: 1:00 - 2:00 PM, Eastern Time

This event has ended.

To commemorate Sickle Cell Awareness Month 2019, this September the National Heart, Lung, and Blood Institute (NHLBI) and partner agencies and institutions will host Sickle Cell Science: Path to Progress, a four-part webinar series that will discuss genetic therapies, progress in pain management, bone marrow transplants and other therapies, and implementation efforts in the U.S. and worldwide.

Every Wednesday in September, the webinar presenters will address some of the educational and informational needs expressed by patients, family members, researchers, health care providers, and others in the the sickle cell disease community.

Follow the conversation on Twitter using #ScienceofSCD.

NOTICE that you would need to register to EACH webinar separately. There is no option to register for all webinars at once. You will receive separate access information for each webinar.

Schedule of Events
NOTE: For more information about each webinar visit NHLBI's website.

Title: Serving the Sickle Cell Disease Community Here and Abroad
Date: Wednesday, September 4, 2019

Time: 1:00 - 2:00 PM, Eastern Time

Title: Genetic Therapies in Sickle Cell Disease
Date: Wednesday, September 11, 2019

Time: 1:00 - 2:00 PM, Eastern Time

Title: Bone Marrow Transplants, Other Therapies, and Sickle Cell Disease
Date: Wednesday, September 18, 2019

Time: 1:00 - 2:00 PM, Eastern Time

Title: Sickle Cell Disease Care in the Emergency Department: Improvement Initiatives and Ongoing Research — CME Available*
Date: Wednesday, September 25, 2019

Time: 1:00 - 2:00 PM, Eastern Time

This event has ended.

To commemorate Sickle Cell Awareness Month 2019, this September the National Heart, Lung, and Blood Institute (NHLBI) and partner agencies and institutions will host Sickle Cell Science: Path to Progress, a four-part webinar series that will discuss genetic therapies, progress in pain management, bone marrow transplants and other therapies, and implementation efforts in the U.S. and worldwide.

Every Wednesday in September, the webinar presenters will address some of the educational and informational needs expressed by patients, family members, researchers, health care providers, and others in the the sickle cell disease community.

Follow the conversation on Twitter using #ScienceofSCD.

NOTICE that you would need to register to EACH webinar separately. There is no option to register for all webinars at once. You will receive separate access information for each webinar.

Schedule of Events
NOTE: For more information about each webinar visit NHLBI's website.

Title: Serving the Sickle Cell Disease Community Here and Abroad
Date: Wednesday, September 4, 2019

Time: 1:00 - 2:00 PM, Eastern Time

Title: Genetic Therapies in Sickle Cell Disease
Date: Wednesday, September 11, 2019

Time: 1:00 - 2:00 PM, Eastern Time

Title: Bone Marrow Transplants, Other Therapies, and Sickle Cell Disease
Date: Wednesday, September 18, 2019

Time: 1:00 - 2:00 PM, Eastern Time

Title: Sickle Cell Disease Care in the Emergency Department: Improvement Initiatives and Ongoing Research — CME Available*
Date: Wednesday, September 25, 2019

Time: 1:00 - 2:00 PM, Eastern Time

This event has ended.

To commemorate Sickle Cell Awareness Month 2019, this September the National Heart, Lung, and Blood Institute (NHLBI) and partner agencies and institutions will host Sickle Cell Science: Path to Progress, a four-part webinar series that will discuss genetic therapies, progress in pain management, bone marrow transplants and other therapies, and implementation efforts in the U.S. and worldwide.

Every Wednesday in September, the webinar presenters will address some of the educational and informational needs expressed by patients, family members, researchers, health care providers, and others in the the sickle cell disease community.

Follow the conversation on Twitter using #ScienceofSCD.

NOTICE that you would need to register to EACH webinar separately. There is no option to register for all webinars at once. You will receive separate access information for each webinar.

Schedule of Events
NOTE: For more information about each webinar visit NHLBI's website.

Title: Serving the Sickle Cell Disease Community Here and Abroad
Date: Wednesday, September 4, 2019

Time: 1:00 - 2:00 PM, Eastern Time

Title: Genetic Therapies in Sickle Cell Disease
Date: Wednesday, September 11, 2019

Time: 1:00 - 2:00 PM, Eastern Time

Title: Bone Marrow Transplants, Other Therapies, and Sickle Cell Disease
Date: Wednesday, September 18, 2019

Time: 1:00 - 2:00 PM, Eastern Time

Title: Sickle Cell Disease Care in the Emergency Department: Improvement Initiatives and Ongoing Research — CME Available*
Date: Wednesday, September 25, 2019

Time: 1:00 - 2:00 PM, Eastern Time

This event has ended.

The Annual Sickle Cell Disease Therapeutics Conference is a forum to discuss the latest advancements and future trends for treating patients with sickle cell disease. Conference attendees will hear presentations from healthcare companies, key opinion leaders, patients, policy makers and others.

When:
September 15, 2021
9:00 AM EST

Where:
Virtual Conference

This event has ended.

The PCORI Annual Meeting brings together members of the healthcare community, including researchers, patients, caregivers, clinicians, insurers, health system representatives, and other stakeholders. The event serves as a report to the nation on PCORI’s progress in funding initiatives to determine which care approaches work best, for whom, and under what circumstances.

Date & Time:
Wednesday, October 26 - Thursday, October 27, 2022; All day

Location:
In person and online

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DRAFT Agenda

5:00pm Registration, networking and Hors d'oeuvres will be served.
6:00-6:45pm Past
6:45-7:30pm Present
7:30-8:00pm Future
8:00-8:30pm Questions and Evaluations

For questions, please contact Leigh Ann Wilson at lawilson2@uams.edu.

Parking: $1.00/hour (max $7.00)
Visitor Parking Deck 3 (located at Capitol & Cedar)
Visitor Parking Rates

This event is brought to you by:
Future Builders, Inc.
Arkansas Black Nurses Association

This event is Facilitated by:
UAMS Adult Sickle Cell Clinical Program
UAMS Institute for Digital Health & Innovation

The event has ended.

Join us as we celebrate National Sickle Cell Awareness Month. We look forward to seeing you IN RED!

Date: Sep 24 2019

Time: 5:00 PM - 7:00 PM

Cost: $85

This event has ended.

Wide interest in a CBS 60 Minutes story about a Florida woman with sickle cell disease (SCD) whose symptoms were eased through gene therapy has prompted the National Heart, Lung, and Blood Institute (NHLBI) to raise awareness of other work the National Institutes of Health (NIH) is doing in this disease.

In the March TV segment, Jannelle Stephenson shared her experience of recovery after receiving genetic treatment as part of an ongoing NIH Phase 1/2 clinical trial (NCT02140554). That study is evaluating the safety and efficacy of the investigational gene therapy LentiGlobin in severe sickle cell anemia.

Developed by Bluebird bio, the therapy is designed to raise patients’ long-term hemoglobin levels. Hemoglobin is the molecule that transports oxygen in red blood cells. Researchers extracted stem cells which have the ability to develop into many different cell types in the body — from people with severe sickle cell anemia and injected them with LentiGlobin BB305 viral vector that carries the modified human beta-A-T87Q globin gene. The treated cells were then delivered back into the patients where they started to produce the hemoglobin (HbAT87Q).

In partnership with community organizations, Global Blood Therapeutics (GBT) is directing a national campaign to raising awareness and understanding of sickle cell disease, including among health professionals focused largely on pain crises, with the goal improving patient care.

Called Sickle Cell Speaks, the campaign highlights diverse stories told by patients, caregivers, friends, and family to educate others, and to help eradicate disease stigmas.

“The sickle cell experience is highly varied, and highlighting the personal stories of these individuals, as well as their family and friends, will help grow understanding and awareness of this condition,” Beverly Francis-Gibson, president and chief executive officer of the Sickle Cell Disease Association of America, said in a news release. “We are proud to partner with GBT to help break down stigmas and make our voices heard.”

SCD patients can experience stigma bias for a variety of reasons, including race, disease status, socioeconomic status, delayed growth and puberty, and the acute pain that often has to be managed by prescription opioids, a 2018 article in the peer-reviewed journal Issues in Mental Health Nursing reported.