| Sickle Cell Caregivers are invited to an online summit November 12-14 full of engaging dialogue, dynamic presentations, and caregiver networking. Many families with loved ones living with sickle cell may not immediately identify with the word caregiver. Still, if they provide love, support, and care to someone with an illness, they are caregivers. |
How the Idea of Having a Caregiver Summit Begin
Sickle Cell caregivers face obstacles while caring for a loved one with a chronic illness, requiring frequent hospitalizations. For example, employment can be strained due to unexpected pain crisis or health complications. Sickle cell is also an invisible illness, so explaining difficulties to people unfamiliar with the disease can be difficult. Sickle Cell caregivers are not alone in their experiences, which led me to host a conversation on Club House a few months ago for parents of youth living with Sickle Cell Disease (SCD). From the discussions, attendees mentioned that we, as caregivers, needed more. Therefore, I partnered with the Sickle Cell Community Consortium to bring the community an entire virtual Sickle Cell Caregiver Summit.
The Summit is Completely Online
For the first time ever, there is a conference solely dedicated to serving the needs of sickle cell caretakers around the nation. During the event, they will be able to connect in one safe space. Since we are still battling a pandemic in our communities, the summit will be 100% virtual to help protect the health of sickle cell families.
The theme is Caregiving Bridging Empathy, Knowledge, and Compassion. We have connected with caregivers across the US and Canada to weigh in and speak and the upcoming event. Some topics are disease education and management, medical resources and access to care, giveaways, and more.
Register
In addition, the experience isn’t all about education alone. We believe that it is crucial to balance the experience with fun and networking among each other. Visit scdcaregivers.org to learn more and register today. Leave a comment below if you need a scholarship.
Session Topics
In case you’re curious about some of the other session topics, we will discuss transitioning from childhood to adulthood with sickle cell, Caregiving for adult warriors, IEPs, 504 plans, Grief, Supporting a loved one with Sickle Cell Disease, strengthening your marital relationship while parenting a child with SCD, and more. Registration assistance is available.
About the Consortium
The Sickle Cell Community Consortium is a 501(c)(3) non-profit formed in 2014 to “harness and amplify the power of the patient voice.” The Consortium includes sickle cell community-based organizations (CBOs), patient and caregiver advocates, community partners, and medical and research advisers. Donations to the Sickle Cell Community Consortium help define problems and gaps in the sickle cell community, identify strategies to address those needs and gaps, and determine the CBO, Community, and Corporate partnerships best equipped to implement those strategies to achieve significant and sustainable change. To learn more, visit SickleCellConsortium.org. Follow The Sickle Cell Community Consortium at facebook.com/SCCConsortium, Instagram at instagram.com/SCCConsortium, and Twitter at (@SCCConsortium).
