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