Join Carla Lewis, CEO of Kids Conquering Sickle Cell Disease Foundation and Rae Blaylark, CEO of Sickle Cell Foundation of Minnesota for the Empowered Caregivers Forum.

Host Carla Lewis and Rae Blaylark are mother's of children born with sickle cell disease. We welcome you to join a forum created to support, educate and share resources with parents/caregivers of a child/children or young adult with sickle cell disease/ trait or thalassemia. The forum will provide a safe place for parents to share & ask questions bridging the gap to important conversations.

Program Objective:
Upon completion of this activity, participants should be able to:
• Increase knowledge about sickle cell & treatments
• Identify current evidence-based practices to improve care of individuals with sickle cell disease
• Identify resources available to caregivers
• Identify treatments & resources available to individuals with sickle cell or chronic blood disorders

Date and Time:
Saturday, July 24, 2021
7:30 PM – 10:30 PM IST

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Kids Conquering Sickle Cell Disease Foundation thanks supporters of our 2022 Sickle Cell & Chronic Pain Symposium. We are looking forward to another great symposium for 2023. We offered an education conference that certainly offered a unique opportunity to learn the latest advances in clinical care, transition services, and emerging new therapies including updates for curative treatment options.

This was a unique conference for the community of patients, care givers, health care providers, social workers, students and those with interest in sickle cell and chronic pain. This conference was not only for attendees with interest in sickle cell. We have a community that lives with chronic pain suffering in silence. We welcomed our community with interest in chronic pain and sickle cell to learn about the latest effective therapies bringing help & hope.

Date & Time:

June 24 – 25, 2022

9:00 AM – 4:00 PM

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Join Foundation for Women & Girls with Blood Disorders (FWGBD) at its biennial educational conference for professionals dedicated to the care and support of women and girls with blood disorders. The FWGBD 2022 Conference will be held on September 24-25, 2022 at the Hyatt Regency Crystal City in Arlington, Virginia.

Whether you are an established physician, medical student thinking about what’s next, or clinic nurse working with patients with blood disorders, FWGBD 2022 has something for you. Tap into a diverse network of active healthcare professionals who have a shared commitment to the unique needs of women and girls with blood disorders. Harness the collective knowledge and experience of your peers with a fresh perspective. Energize your team with new insights, ideas, and strategies drawn from multidisciplinary collaboration at FWGBD 2022.

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As our nation recognizes National Sickle Cell Disease Awareness Month, we do so with an unwavering commitment to a future in which people with the condition live fully, without pain and impediments, and ultimately experience a cure. My Administration, through the Department of Health and Human Services (HHS), is leading unprecedented activity in research, medical education, and models of care in support of people with Sickle Cell Disease (SCD).

A cure is within reach, the Food and Drug Administration (FDA) has approved new treatments and more are on the horizon, and several initiatives are underway to make better use of all available tools in the battle against this disease.

HHS and Howard University are hosting a Healthathon to foster innovative and data driven solutions for sickle cell disease.

Health+ is focused on Sickle Cell Disease (SCD), those with SCD, and the systems that enable or block patient care. Specifically, Healthathon participants will be focusing on three main areas: the difficulty of emergency room care for those with SCD, the often very difficult transition from pediatric SCD care to adult care, and  improving treatment options and sustainable outcomes for SCD patients. 

During two weeks in September, we are inviting individuals and teams to draft solutions on challenges using background materials provided and their own ingenuity.

Date:

September 3, 2020 - September 25, 2020

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Join us for a Zoom gathering as we celebrate National Sickle Cell Awareness Month.

We look forward to seeing you ONLINE and IN RED!

Date & Time:
September 28, 2021
06:00 PM - 07:00 PM

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Sign up to participate in SCDAA's Sickle Cell Awareness Month Twitter Party! Use the hashtag #SickleCellMatters on Thursday, September 9, 2021; Tuesday, September 21, 2021; and Thursday, September 30, 2021 from 12:30-1:30 p.m. EST. We will share our collective posts for a time of sharing, learning and celebrating.

The Sickle Cell Disease Matters Walk 2021 will engage the community and increase awareness about sickle cell disease, the need for better treatment throughout a patient's lifetime and ultimately find a cure.

The Sickle Cell Disease Association of America Michigan Chapter is celebrating 50 years of service to individuals living with sickle cell disease and their families.

Unfortunately, due to the current COVID pandemic conditions we have made the difficult but necessary decision to make the walk completely virtual.

Date:
September 1, 2021 to September 30, 2021

We are in this fight together for Sickle Cell, but we can’t be together now. Stay connected to the TOVA by supporting the James Faucett III Sickle Cell Virtual/Pop-Up 5K Run/Walk.

We invite you to still participate where you are by running or walking for 20 minutes during the weekend of September 25-26, 2021. Stay Tuned for the Pop-Up location on Social Media @tovacommuityhealth!

All proceeds support TOVA Community Health, which provides comprehensive holistic and compassionate care and outreach to individuals with complex medical conditions like sickle cell anemia/trait.

This year’s Policy Summit will offer a variety of stakeholder perspectives on hot topics in the gene therapy field and how they inform regulatory, legislative, and payment policies for diagnosis and treatment.

Date:
September 22-24, 2021