November 21, 2020
11 AM – 1:30 PM PST

Through 3 separate talks, this seminar series will focus on the medical (neurological/developmental), neuropsychological, behavioral, and educational aspects of the neurocognitive complications of sickle cell disease to raise awareness in patients and providers about these challenges.

Our goal is to help raise awareness about the neurocognitive challenges associated with sickle cell disease so that patients, parents, and their families will be able to recognize these issues earlier in life, actively discuss their concerns with their providers in an informed manner, and advocate for necessary treatments and services.

You will learn:

1. The role of executive function in child and adult development
2. Why and how sickle cell disease can impact executive function
3. Diagnostic and treatment options available for executive dysfunction
4. Cognitive challenges associated with sickle cell disease, such as ADHD, learning disabilities, and language disorders

We look forward to having you join us during these mini-seminars. Mark your calendars for the others taking place in 2021:

• Saturday, March 20, 2021 from 11 am - 1:30 pm PST
• Saturday, May 22, 2021 from 11 am - 1 pm PST

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People with sickle cell disease (SCD) treated with hydroxyurea in the U.S. still face many challenges, including the financial burden posed by their healthcare expenses, low treatment adherence, and high treatment discontinuation rates, according to a study based on pharmacy claims data.

The study, “Treatment patterns and economic burden of sickle-cell disease patients prescribed hydroxyurea: a retrospective claims-based study,” was published in Health and Quality of Life Outcomes.

SCD is a rare genetic disorder caused by mutations in the HBB gene, which provides instructions for making hemoglobin, a protein responsible for transporting oxygen in the blood.

Roland B. Scott Symposium on Sickle Cell Disease

"Glimmers of Hope"

May 19, 2021

Virtual Event, 10am to 4pm EDT

Join the conversation about new treatments for sickle cell disease and panel discussions on stigma, sexuality, aging, and insurance. Join through the web and the Whova app that can be downloaded after registration for a real interactive experience. 

Speakers include Greg Kato, MD; Shawn Bediako, PhD; Lakshmanan Krishnamurti, MD; and Ahmar U. Zaidi, MD.

Registration is free. Please DONATE at least $20 to keep this event free for those who need it.

This event has ended. Next event will be in May 2023.

If you are a researcher, community-based member organization, physician, nurse, social worker or someone working on behalf of people living with sickle cell disease and their families, Sickle Cell Disease Association of America, Inc. would like to highlight your work at the 51st Annual National Convention October 11-14, 2023, Arlington, VA.

To be eligible, abstracts must meet guidelines and be submitted by July 17, 2023. Late submissions will not be accepted. Abstracts will be reviewed and ranked by the national abstract review committee. Abstract finalists will be judged during oral presentations and presented at the gala. “Best Abstract” in each category will be announced at the conclusion of the SCDAA 51st Annual National Convention. Special awards for the best student and trainee abstracts will also be given.

More information to come!

In recognition of World Sickle Cell Day, which falls on June 19, 2021, Global Blood Therapeutics, Inc. (GBT) and the Sickle Cell Disease Association of America, Inc. (SCDAA) launched “Lift Every Voice to Shine the Light on Sickle Cell” – a contest that will feature original spoken word pieces to raise awareness of sickle cell disease (SCD). The contest, which aims to elevate the voices and experiences of people living with SCD and their caregivers, is presented by Sickle Cell Speaks, GBT’s SCD education campaign that highlights authentic stories of those living with SCD to dispel misconceptions about the disease.

Spoken word poetry is an art form rooted in traditions of storytelling to convey compelling messages and personal experiences. People living with SCD and their caregivers are invited to sign up to submit videos of themselves performing original spoken word pieces about their experience with SCD. Participants must sign up by May 24, 2021, and be U.S. residents.

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International Association of Sickle Cell Nurses and Professional Associates (IASCNAPA) is creating a memorial digital booklet for World Sickle Cell Day. If you want to honor a sickle cell warrior who has passed, send a photo, poem, or memory to 610designsandco@gmail.com by June 1, 2021.

Friday, April 23, 2021
8:30am – 12:30pm EDT
Live on Facebook
https://www.facebook.com/MartinCenterSCI/

This half-day Sickle Cell Disease conference will feature educational sessions for healthcare providers, patients/families, and social services providers. Local and internationally known experts will present important, contemporary information that will broaden current thinking while covering treatment protocols that can improve the health and longevity of youth affected by Sickle Cell Disease. The sessions are open to the public via an Internet based webinar format. All attendees will be provided with information about available resources and current trends in the field.

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Sickle Cell Disease Association of America, Inc. (SCDAA) will host its 2021 Annual Advocacy Day event on April 20-21 from 4-5 p.m. Eastern Time.

In response to COVID-19, Advocacy Day will be held virtually this year.

Register for Day 1 – April 20

Register for Day 2 – April 21

Advocacy Day is an opportunity for patients and caregivers affected by sickle cell disease to learn how to advocate for issues that are important to them. Participants will learn about the key legislative issues that are important to individuals living with SCD and their families, including promoting stable funding for research, better healthcare access and increased education and awareness for the sickle cell community throughout the country.

SCDAA invites individuals representing their 53 member organizations and affiliates from 29 states to participate in this virtual advocacy training and raise awareness of sickle cell disease.

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Sickle Cell Disease Association of America, Inc. (SCDAA) and Hemanext Inc., a privately held medical technology company dedicated to improving the quality, safety, efficacy and cost of red blood cell (RBC) transfusion therapy, are proud to announce a new partnership that will help SCDAA deliver on its mission and meet its goals. In 2020 Hemanext will collaborate with SCDAA on its educational programs, grassroots events and public-awareness campaigns.

Sickle cell disease (SCD) affects 100,000 individuals in the United States, disproportionately affecting African Americans with one in 500 African Americans suffering from the disease. People with SCD often require regular blood transfusions, particularly units of RBCs. Hemanext is committed to developing a novel RBC product to deliver improved and longer-lasting transfusions.

Nurses’ week takes place between Thursday, May 6 – Wednesday, May 12, 2022. May 12 is significant as it marks the revered Florence Nightingale’s birthday. It takes place annually and this is going to mark the 202nd year of celebrating Nurses’ Week.

Nurses have sacrificed so much for the community. It’s only fitting that there’s a week dedicated to giving back to them. Accordingly, in this blog, we will take a look at:

• What is Nurses’ Week?
• What can you do to celebrate Nurses’ Week?
• The history of Nurses’ Week

What Is Nurses’ Week?

Nurses’ week is an annual celebration of nurses worldwide for the work they do for others. The week allows people the chance to acknowledge the nurses in their lives. It also provides an opportunity to thank nurses within the industry as a whole for the work they’ve done.

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