The Sickle Cell Community Consortium is gearing up for its inaugural Caregiver Summit, to be held virtually Nov. 12–14. The event is being hosted in partnership with Cleverly Changing, the Parent 2 Parent initiative, and members of the sickle cell disease (SCD) community nationwide.
Topics will include mental health and self-care, disease education and management, medical resources and care access, and SCD research and treatments.
“If you are a sickle cell caregiver, you are invited!!!” the consortium, also known as SC3, tweeted recently in spreading the news about its upcoming event.
Patients and caregivers who register by Oct. 15 will have access to an early bird price of $15. After that, the fee will increase to $25. To request a fee waiver, send an email to Maria Rivera at firstname.lastname@example.org. A Complete Caregiver Go-Bag will be shipped to qualifying caregivers.
Supporters and healthcare and industry professionals also are invited to register for the Caregiver Summit.
The fee for supporters is $40, while the cost for nurses, social workers, and other healthcare professionals is $55. Registration for physicians is $75, and industry professionals, including those from pharmaceuticals, will be charged $100 each.
Event materials will be mailed to participants who register by Nov. 1. The organization is recommending that participants download the Whova mobile app to fully experience the event.
“We invite you to join us for two days of engaging dialogue, dynamic speakers, and to hear from innovative voices within the sickle cell community,” the consortium states on the event’s webpage.
“Attendees will have an opportunity to share information about how they are navigating life with their loved ones,” the website states. “Discuss best practices for hospitalizations and times when intervention is needed. We will deepen connections and build new relationships as we discuss our unique experiences.”
With the theme “Caregiving: Bridging Empathy, Knowledge, and Compassion,” the summit aims to help caregivers learn how to cope and support someone with the blood disorder, as well as learn best practices for how to care for themselves and their loved ones.
Registrants can participate in giveaways, lunch-and-learn sessions, and family activities. They also will get advice on how to maintain a healthy relationship with an SCD patient, collectively referred to as “warriors.”
Specific topics addressed during the summit include coping with grief, single parenting and SCD, and how to cope and support someone with SCD as a friend, sibling, or parent. Dating a person with SCD, and how spouses can best support each other when raising a child with the disease are other key topics.
The summit also will address guiding a son’s or daughter’s education, supporting teens as they enter adulthood, therapy for caregivers plus self-care and nutrition, and how to build trust with one’s healthcare team. There also will be a therapy-guided workshop for minor caregivers, plus morning wellness activities.
Speakers will include sickle cell disease experts and specialists, in addition to family members and caregivers of SCD patients.
The nonprofit SC3 is comprised of community-based SCD organizations, patient advocates, community partners, and medical and research advisers. Cleverly Changing is a blog for tips on health, finance, parenting, and more. The Parent 2 Parent initiative, powered by the SC3, is a platform for SCD parents and caregivers.
The consortium said it has worked with its partners “to bring our 1st Virtual Caregiver Summit!”
“Yes an entire summit for our CAREGIVERS!” the organization said on Twitter. “Go to scdcaregivers.org and register.”