RESOURCES

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.

ADVOCACY RESOURCES

AXIS Advocacy

SCDAA Advocacy Resources

APPS

ASH Pocket Guides

CaRISMA (videos, health coach, etc.)

Living Well With Sickle Cell

SCD Companion App

BLOOD DONATIONS

American Red Cross

Caregiver Websites

Family Caregiver Alliance

Sick Cells’ Road Map of Resources

Caregiver Action Network

CLINICAL TRIALS

Search for Clinical Trials

ASH Research Collaborative

Be The Match

National Institute of Health

COLLEGE RESOURCES

Accommodations for College Students 

Grants for Sickle Cell Anemia

Federal Student Aid

College Scholarships Dealing with SCD

EveryLife Foundation For Rare Diseases

International Association of Sickle Cell Nurses And Professional Associates

Patient Advocate Foundation

CURATIVE THERAPIES

Types of Gene Therapy

American Society of Gene + Cell Therapy

SiSC Transplant Advocacy & Research

EDUCATION

SC3 Warrior University

Sickle Cell Disease Coalition

Sickle Cell Disease Association of America

One SCD Voice

EMPLOYMENT ASSISTANCE

Office of Disability Employment Policy

Social Security Disability with SCD

Job Accommodation Network

HEMATOLOGISTS

Search for a Hematologist

HOSPITAL RESOURCES

Rethink Sickle Cell Disease

SCD Implementation Guide

LOCAL RESOURCES

Local Department of Health

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

Suicide Prevention Lifeline

MOM FACEBOOK GROUPS

Sickle Cell Mommies Club

Sickle Cell Moms Rock

Parents of Children with Sickle Cell Anemia

NATURAL FACEBOOK GROUPS

Sickle Cell Natural Journey

Healing Blends Sickle Cell Support

New Diagnosis Guides

The Management of SCD

A Parent’s Guide to Sickle Cell Disease

Hydroxyurea Treatment

Prescription Assistance

Healthwell Foundation

Regional Programs

SCHOOL / SUMMER CAMP 

SCD Summer Camps

IEP for education (sickle cell)

Educator’s Guide to SCD and School

VA’s Understanding the Child

Sickle Cell Books

Sickle Cell Coalition Book List

SickleCellBooks.com

STORYTELLING

Generation S

Sickle Cell Speaks

Faces of SCD

TRANSITION RESOURCES

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                    

 

Disability Resources

 

Tri-County Sickle Cell Disease Associates

(407)-298-8871

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)

(800) 772-1213

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.

 

Medical Bills

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.

 

https://lovelightcompassion.org/application-and-submission-guidelines/

 

Modest Needs

(844) 667-3776

www.modestneeds.org/about-us/ 

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.

 

Description:

The PAN Foundation offers disease-specific assistance programs to help patients pay for their out-of-pocket costs.
 

Out-of-pocket costs may include:
- Deductibles
- Co-pays and coinsurance
- Health insurance premiums
- Transportation expenses to and from medical appointments and pharmacies

 

HealthWell Foundation

Assists patients living with chronic diseases with copays, deductibles, premiums, and out-of-pocket expenses.
http://www.healthwellfoundation.org/ 

(800) 675-8416

 

UBCCares Program

(844) 599-2273

Provides co-pay assistance

 

USA Grant Applications

https://usagrantapplication.org/grants-for-health-care/

 

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
1-800-532-5274
https://www.patientadvocate.org/connect-with-services/case-management-services-and-medcarelines/


* 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

https://www.debt.org/medical/financial-help-medical-bills/

https://www.usa.gov/help-with-bills#item-36707

https://www.goodrx.com/insurance/health-insurance/medical-financial-assistance-programs

 

Sickle Cell Resources

 

Be the Spark

https://www.sparksicklecellchange.com/

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

https://ascaa.org/sickle-cell-support-groups/

Family counseling and support services for the program’s clientele.

 

Sickle Cell Disease Foundation

https://www.scdfc.org/programs-services

Free counseling services, information on living healthy with Sickle Cell Anemia