Caregivers are the champions and superheroes of the sickle cell community. We recognize, however, that even superheroes need resources and support.
Resources for additional information ranging from “Clinical Trials” and “College Resources” to “Mental Health Resources” and “Moms Facebook groups”. The list includes information for “Transition resources”, “Emergency Protocols”, and groups that help with prescription assistance.
CaRISMA (videos, health coach, etc.)
Sick Cells’ Road Map of Resources
Accommodations for College Students
College Scholarships Dealing with SCD
EveryLife Foundation For Rare Diseases
International Association of Sickle Cell Nurses And Professional Associates
American Society of Gene + Cell Therapy
SiSC Transplant Advocacy & Research
Sickle Cell Disease Association of America
Office of Disability Employment Policy
Social Security Disability with SCD
Sickle Cell Program
MENTAL HEALTH RESOURCES
Be The Match Counseling Services
Sickle Cell Disease Foundation
A Counseling Guide for Sickle Cell and Other Hemoglobin Variants
MOM FACEBOOK GROUPS
Parents of Children with Sickle Cell Anemia
NATURAL FACEBOOK GROUPS
Healing Blends Sickle Cell Support
New Diagnosis Guides
A Parent’s Guide to Sickle Cell Disease
SCHOOL / SUMMER CAMP
IEP for education (sickle cell)
Educator’s Guide to SCD and School
Sickle Cell Books
Sickle Cell Coalition Book List
Sickle Cell Transition E-Learning Program
Johns Hopkins All Children’s sickle cell transition program SCULPT
Boston Medical Center’s SCD
FINANCIAL SUPPORT OPTIONS
Healthcare Plan Change/Questions
Healthcare Concierge-(888) 277-6054
Tri-County Sickle Cell Disease Associates
The Sickle Cell Disease Association of Tri-County serves as a Support Service Agency. These services include but are not limited to: Medical Bill Assistance, Transportation, Career Counseling/Planning, Medical Co-Pay, Funeral/Burial Assistance, Housing, Clothing, Food, SSI/Disability Prep & Insurance Application assistance. The mission of sickle cell disease association of Orange, Seminole, and Osceola Counties, Inc. is to educate the public regarding sickle cell disease and sickle cell trait. In addition, the organization is committed to providing economic, psychological and emotional support to individuals and families affected by the dreaded disease.
Supplemental Security Income (SSI)
Anyone may apply for SSI. The SSI program provides monthly payments to people who:
Are at least age 65 or blind or disabled.
Have limited income (wages, pensions, etc.).
Have limited resources (the things you own).
Are U.S. citizens, nationals of the U.S., or some noncitizens.
Reside in one of the 50 states, the District of Columbia, or the Northern Mariana Islands. Exception: The children of military parent(s) assigned to permanent duty outside the U.S. and certain students temporarily abroad may receive SSI payments outside the U.S.
Love, Light, Compassion Foundation: (802) 265-1552
Love Light Compassion Foundation (LLCF) reserves the right to make individual gifts directly to applicants in need or block grants to qualifying organizations. Recipient organizations are required to provide a HIPPA compliant report on funds disbursed on a quarterly basis.
Love Light Compassion Foundation accepts unsolicited applications from qualifying healthcare organizations, healthcare social workers, patient navigators. Individuals, please submit through your healthcare provider. Once an application is reviewed, every effort is made to respond to approved requests within 48 hours.
Individual gifts are based on need with a maximum $1,000 per patient/family/caregiver.
Block Grants are distributed up to $10,000 with disbursement recommendation of up to $1000 per patient/family/caregiver.
LLCF requests that follow-up requests are not submitted less than 6 months from initial gift/grant.
A charitable organization that helps with securing a variety of grants, including funds for medical bill assistance. Cash grants and funds provided can be used to aid qualifying individuals. Some of what can be provided includes self-sufficiency grants, back to work funding, independent living grants and more. To responsibly provide short-term financial assistance to individuals and families in temporary crisis who, because they are working and live just above the poverty level, are ineligible for most types of conventional social assistance but who (like many of us) are living one or two lost paychecks away from the kind of financial catastrophe that eventually leads to homelessness.
Patient Access Network Foundation - Applications
Phone: 866-316-7263 Fax: 866-316-7261
Notes: For all applications-related questions.
The PAN Foundation offers disease-specific assistance programs to help patients pay for their out-of-pocket costs.
Out-of-pocket costs may include:
- Co-pays and coinsurance
- Health insurance premiums
- Transportation expenses to and from medical appointments and pharmacies
Assists patients living with chronic diseases with copays, deductibles, premiums, and out-of-pocket expenses.
Provides co-pay assistance
USA Grant Applications
Description: Medical Bills Assistance and Health Insurance Programs. The U.S. Department of Health and Human Services (DHHS) offers grants and assistance for individual health care. Many programs on state and local levels provide free grants, and health insurance is available for people with low-to-moderate income through multiple programs. All health grants and programs have eligibility requirements: in most, the amount you are awarded depends on such factors as your annual income and the number of dependents in your family
How to Apply
It is easy to apply, as many grant applications are now done online. It doesn’t cost anything, and you can try for as many grants as you choose.
Applicants will need to apply online for assistance
Hospital Bill Assistance:
*Contact hospital billing office to determine financial assistance availability.
*Financial Assistance with Medical bills and co-pays:
*Ask your medical providers if they offer assistance. Let them know you are experiencing financial hardship. Speak with someone in the billing office. They may be able to set up a payment plan, reduce the amount that is due or waive the expense entirely.
Patient Advocate Foundation-Case Management
* Online Intake 24/7. Case management can help with navigating through
multiple medical bills.
* Our team of professional case managers assist with disability, health
insurance navigation including prior authorization, appeals for denied
services, second opinion options and screening for clinical trials. The case
managers also assist patients who are experiencing financial challenges that
are impacting their ability to pay for care and basic cost of living expenses
like housing, utilities, food and transportation, researching and linking them
to available financial support programs that may meet some of these needs.
Uninsured patients are also supported by the program with direct support in
accessing public programs, health insurance enrollment and charity care
that will allow access to necessary care.
General medical bill assist information
Sickle Cell Resources
Be the Spark
A hub of information about sickle cell anemia, how to care for yourself, supportive resources, opportunities to be involved in advocacy.
American Sickle Cell Anemia Association
Family counseling and support services for the program’s clientele.
Sickle Cell Disease Foundation
Free counseling services, information on living healthy with Sickle Cell Anemia