What To Expect
The Annual Sickle Cell Caregivers Summit is a premier event designed to educate, empower, and connect those who provide care for individuals living with sickle cell disease. This summit offers a unique opportunity for caregivers—whether family members, friends, or healthcare professionals—to come together and learn from leading experts in sickle cell care, as well as from each other. Featuring keynote presentations, panel discussions, interactive workshops, and networking sessions, the summit covers a wide range of topics, including medical management, emotional well-being, advocacy, and strategies for improving quality of life.
Community Building: Fostering Connection and Support
Fostering community is key to empowering caregivers and reducing feelings of isolation. This discussion will focus on creating inclusive spaces for caregivers to connect, share experiences, and build supportive relationships. The impact of peer support groups on caregiver resilience and mental health will be explored, along with strategies for utilizing community events and online platforms to strengthen caregiver networks. Interactive sessions will encourage participants to share personal stories and establish peer support networks, enhancing the sense of community among caregivers.
Advocacy: Amplifying Caregiver Voices
Advocacy is crucial in enhancing the visibility and addressing the needs of caregivers in society. This session will focus on empowering caregivers to advocate for themselves and others, emphasizing effective strategies for building relationships with policymakers to influence care-related legislation. Participants will hear inspiring success stories where caregiver advocacy has led to meaningful changes. Workshops will provide practical tools for crafting impactful advocacy messages and connecting with local representatives, equipping caregivers to make their voices heard.
Collaboration: Strengthening Networks and Resources
Collaboration among caregivers, healthcare providers, and community organizations is essential for improving care outcomes. This segment will explore how creating support networks and resource-sharing initiatives can enhance the caregiving experience. Best practices for working with multidisciplinary teams will be discussed, along with the role of technology in facilitating collaboration and communication. Panel discussions featuring caregivers and professionals will highlight collaborative experiences and showcase effective resource-sharing platforms, fostering a sense of community and support.
Self-Care: Prioritizing Caregiver Well-Being
Prioritizing self-care is vital for caregivers to maintain their health and effectiveness in their roles. This session will emphasize the importance of recognizing barriers to self-care and developing strategies to overcome them. Participants will learn to incorporate mindfulness and stress-relief techniques into their daily routines and will have access to resources for mental health support and wellness programs specifically designed for caregivers. Guided self-care workshops, including mindfulness practices and stress management techniques, will empower caregivers to prioritize their well-being.
MEET THE HOSTS
About The
Sickle Cell Community Consortium
The Sickle Cell Community Consortium is a US-based non-profit formed in 2014 to “harness and amplify the power of the patient voice”. The Consortium is comprised of sickle cell community-based organizations (CBOs), patient and caregiver advocates, community partners and medical and research advisers. These stakeholders collectively form the General Assembly of CBOs and Advocates, the decision-making body of the Consortium. The Consortium acts as an organizing entity providing the framework for the stakeholders of the General Assembly to apply a model of Collective Impact to 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.
About
Cleverly Changing
Cleverly Changing is a go-to blog for tips on health, finance, parenting, and more.
CleverlyChanging.com was created in May 2010 as an outlet to help me share information I learned. My twin daughters were almost 24 months and I wanted to replace the many hours I had previously spent breastfeeding doing something else productive.
One of my missions on my blog is to bring awareness to the forefront about Sickle Cell Anemia and healthy-living. I share the highs and lows of parenting a child with Sickle Cell Disorder and Type 1 Juvenile Diabetes.
Through Cleverly Changing I believe, together, we can help empower and inspire others to live cleverly, changing when necessary. It is also my goal to raise my daughters to be healthy women that love life and have enough self-awareness to believe they will move mountains. I want my children to live fearlessly and take calculated and educated risks.
About
Parent-to-Parent
Initiative
The Parent to Parent Initiative, powered by the Sickle Cell Community Consortium, is a unified platform of parents and caregivers focused on building connections, increasing access to education and resources, and promoting advocacy through a national parent to parent network of families living with
sickle cell.