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Patients & Families

STORM values the role that parents, patients, and caregivers play, as they are the people who most intimately understand sickle cell disease. We believe that engaging a variety of stakeholders, including patients and family members, is critical to our success and will help us improve health outcomes faster.

Teens and Young Adults

Here you can learn more about sickle cell, share with other teens and young adults living with sickle cell, get tips for staying healthy and get prepared for the transition to an adult doctor.

STORM Patient/Family Engagement
Workgroup Members in the News

Kevin and Robyn Kinebrew's SCD Journey

Kevin and Robyn Kinebrew describe their journey with sickle cell disease fromthe very beginning, when they received a call that their 33-week twins, hospitalized in the neonatal intensive care unit, had sickle cell disease. The Kinebrews share how they have approached clinical interactions over the past 19 years and share opportunities for families to connect with physicians. The Kinebrews also share their experiences about helping their sons prepare for transition to adult care.

Rae Blaylark, CHW

'Emergency': Minnesota slow to act as sickle cell cases climb | Minnesota Public Radio, July 17, 2018

Rae Blaylark, a member of the STORM Patient/Family Engagement Workgroup and the president and founder of the Sickle Cell Foundation of Minnesota, was interview by Minnesota Public Radio regarding her advocacy work and the state of sickle cell disease in Minnesota. Rae speaks about being the mother of a young adult with sickle cell disease and the lack of support she experienced that drove her passion to advocate for others. The article discusses how Rae and Dr. Stephen Nelson (STORM partner, MN state lead) have partnered to ignite change by informally “tapping the state Health Department, the [University], health insurers, the Center for Health Equity, emergency room physicians and the governor's office.”

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Rare Disease Week | February 25 – March 1, 2018

Rae attended Rare Disease Week on Capitol Hill – an event that brings together rare disease community members from across the country to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators. In addition to the nearly 400 rare disease patient advocates, more than 30 sickle cell patients and advocates participated in the events held in Washington D.C. This was the largest representation from the sickle cell community that has ever been present for this week-long event!

www.rareadvocates.org

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References

2. Hassell KL. Population Estimates of Sickle Cell Disease in the US. Am J of Preventive Medicine. 2010;38(4S):S512-S521.

3. National Heart, Lung and Blood Institute, http://www.nhlbi.nih.gov/health/healthtopics/topics/sca/, Accessed May 5, 2014.