Resources & Support
Access a comprehensive collection of resources, support networks, and educational materials to help navigate life with sickle cell disease.
Finding Support and Information
Living with sickle cell disease can be challenging, but you don't have to face it alone. This page provides access to a wide range of resources, from support groups and educational materials to financial assistance programs and healthcare provider directories. Whether you're a patient, caregiver, healthcare professional, or educator, you'll find valuable information to help navigate the journey with sickle cell disease.
Support Networks
Connecting with others who understand the challenges of living with sickle cell disease can provide emotional support, practical advice, and a sense of community. Support groups exist in many forms, from in-person meetings to online forums and social media communities.
These networks can be valuable resources for sharing experiences, learning coping strategies, and staying informed about the latest treatments and research developments.
National Organizations
SCDAA is a national organization that provides advocacy, education, and support for individuals and families affected by sickle cell disease. They offer resources, community events, and connections to local chapters across the United States.
The Sickle Cell Foundation focuses on improving the quality of life for individuals with sickle cell disease through education, support services, and advocacy for research funding. They provide resources for patients and healthcare providers.
Online Communities
Sickle Cell Warriors is an online community created by and for people living with sickle cell disease. The website and social media platforms provide forums for discussion, personal stories, and practical advice for managing the condition.
Finding Local Support Groups
In-person support groups can provide valuable face-to-face connections with others in your community who understand the challenges of living with sickle cell disease. To find local support groups:
- Contact your local chapter of the Sickle Cell Disease Association of America
- Ask your healthcare provider or hospital's social work department
- Search online directories of support groups
- Contact your local community health center
Contact Us
Have questions or need personalized assistance finding resources? Our team is here to help. Fill out the form below, and we'll connect you with appropriate resources for your specific needs.
Emergency Resources
If you're experiencing a medical emergency related to sickle cell disease, please:
- Call 911 or your local emergency number immediately
- Go to the nearest emergency room
- Bring your medical information, including your sickle cell disease treatment plan