Dream Teen Transition Program Accepting Applications!
The Dream Teens Transition Program looks to empower young patients with SCD with the tools and information to successfully transition from pediatric to adult care .
Click here to apply
This event has ended.
Learn about:
• The fertility, pregnancy, and other sexual health issues and challenges individuals with Sickle Cell Disease face;
• Policies and processes that need your advocacy for change;
• How to improve access to overall reproductive health care; and
• Resources available for support.
This event has ended.
Sickle Cell Awareness 365
Transition Focus Group
Saturday, May 20, 2023
Virtual Event, 1 pm–3 pm EST
Are you a parent of a Sickle Cell Warrior? Are you a Sickle Cell Warrior between the ages of 13–23? We want to hear from you on how we can help our young Warriors transition into adulthood.
This focus group is to understand the needs and wants of Warriors and their caregivers as they transition from pediatric care to not only the adult healthcare system but learning how to adult with Sickle Cell Disease as a whole. We are a unique group of people and cannot move in the ways that our peers can. We want younger Warriors to understand that it is entirely okay to dance to the beat of your own drum and embrace your uniqueness for the betterment of yourself.
You have a chance to win a $25 gift card for your participation.
More info:
info@sca365inc.org
770-376-7242
Roland B. Scott Symposium on Sickle Cell Disease
"I Want Somebody to Love"
Friday, May 19, 2023
Live and Virtual Event, 10 am –3 pm
W. Lester Henry Auditorium
Howard University Hospital
This event will explore stigma, relationships and reproductive issues for those living with sickle cell disease. It will include two panels and a town hall, as well as awards and memorials.
Speakers include Teonna Woolford and Ahmar U. Zaidi, MD.
July 18-20 | Boston, Massachusetts
This conference focuses on building end-to-end support for patients with rare diseases. SCDAA President and CEO Regina Hartfield will participate on a panel about increasing diversity, equity and inclusion in clinical trials. Patients, caregivers and patient advocates are welcome. Register by May 26 to receive a discount.
Soul Session is a weekly mental health and wellness initiative aimed at fostering a supportive community. Every Thursday at 7:00 PM Eastern, attendees gather on the Sickle Cell Community Consortium Facebook page for breathing exercises, conversations and mental health check-ins. By prioritizing self-care, Soul Session helps individuals keep their week on a positive note, promoting overall health and wellness.
Sickle cell disease (SCD) complicates reproductive health for affected individuals. Girls and women with SCD confront challenges associated with menstruation, contraception, infertility risks, and high-risk pregnancy. This workshop assumes a lifespan approach to reproductive health in people with ovaries and sickle cell disease and engages questions related to pathophysiology, clinical care, and structural disparities that need to be addressed to fulfill the promise of high quality, individualized, comprehensive care for girls and women with SCD.
During the workshop’s first day, the major themes will be ovarian reserve, menstruation, and contraception. The first session will address the reproductive lifespan and accelerated decline of ovarian reserve as it may have devastating consequences including miscarriage, infertility, and early menopause. The extent to which we know whether or not and how SCD treatments and cures exacerbate these risks will be addressed. As gene therapy trials continue and FDA approval may be near, fertility preservation is a growing concern for the SCD community as existing preparative regimens are gonadotoxic. In the “Reproductive Lifespan & Fertility Preservation in SCD” session, the focus is on highlighting the lack of our understanding the pathophysiology of ovarian reserve decline and to implement access to cryo-tissue preservation early. Other interventions such as genetic counseling and assisted reproductive technologies will also be addressed.
Sickle Cell Community-Wide Support & Empowerment Group
Thursday, November 30, 2023
Virtual Event, 7:30 pm–9:00 pm EST
Join the monthly support & empowerment group for community members impacted by sickle cell disease.
Support & Empowerment groups provide a safe space to:
1. Meet others in the sickle cell community
2. Discuss the challenges related to living with sickle cell disease
3. Share your encouraging victories and life lessons with others
4. Gain valuable insight and resources that can help improve your quality of life
Who We Are: Sickle Cell Disease Foundation of Minnesota's mission is to improve quality of life and increase access to knowledgeable and compassionate care for individuals and communities affected by sickle cell disease.
About This Program/Activity: The Sickle Cell Support and Empowerment Group is part of our Sickle Cell Patient Support Program. The adolescent and adult group meets on the last Thursday of each month and is open to ALL members of the sickle cell community ages 16+, regardless of state.
*To maintain the privacy of participants, registration is required each month!
April 13, 2023 - SCDAA’s Medical and Research Advisory Committee is still receiving reports of intermittent shortages of penicillin VK liquid. Below is a slight update to the statement released on this topic in January.