helpful information:
sickle cell disease
brochures
downloadable & printable
sickle cell disease and other blood disorders
helpful links
informational links
American Society of Hematology (ASH)
https://www.hematology.org/education/patients
The American Society of Hematology (ASH) is the world leader in establishing standard-of-care for blood disorders. Their online patient education center includes valuable, accurate, educational resources for patients and healthcare providers.
Sickle Cell Disease Association of America
https://www.sicklecelldisease.org
The Sickle Cell Disease Association of America is one of the nation’s more prominent advocates for up-to-date, state-of-the-art treatment of sickle cell disease, as well as patient education.
National Institutes of Health
https://www.nhlbi.nih.gov/health-topics/sickle-cell-disease
The NIH resource for sickle cell disease is available for patients here in English and Spanish. The NIH also publishes the NHLBI guidelines for sickle cell disease, most recently updated in 2014. If you are a healthcare provider, please see the ASH guidelines (above) for more up-to-date information about sickle cell disease, as much as has changed since 2014.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6938294/
“Immunization Adherence in Children with Sickle Cell Disease: A Single-Institution Experience” by Infanti, Elder, Franco, et al. This article provides some handy flow charts for vaccinating children with sickle cell disease, which, in Dr. Stauffer’s opinion, is easier to read than the CDC website.
emotional support/resource organizations
Sickle Cell Disease Foundation
Support
- Camp Crescent Moon
- Ages 7-14
- Creative outdoor group experience for children with SCD
- Group activities, campfire programs, and community living
- Camp Gibbous
- Ages 15-20
- Activities include Archery, Zipline, Ropes Course, etc.
- SC Crew
- Supportive group of teens with SCD to learn, grow, and build relationships
- Free Counseling
- Experts that understand how SCD can affect your family and individuals
Eligibility
- Age requirements per Camp
- Fill out an application
- Must have SCD
- Physical exam with doctor prior to camp
Location
- Orange, CA
Beanie Love Foundation
Support
- Hope Pack
- Personalized drawstring bag, a joke book, personal letter of encouragement, devotional, Spotify playlist, and toys and activities chosen for the child
Eligibility
- Must have a pediatric life-altering disease
- Must fill out an application on the website
Location
- Headquarters: Phoenix, AZ
- Operates Nationally
non-profit organizations accepting donations / fundraising for sickle cell disorder
American Sickle Cell Anemia Association
Support
- Raises funds to further research on SCD
Eligibility
- Anyone who can donate on their website
Location
- Operates Nationally
Sickle Cell 101
Support
- Raises funds toward providing quality, patient-centric, educational information about SCD and trait to the world
Eligibility
- Anyone who can donate
Location
- Operates internationally
Sickle Cell Community Consortium
Support
- Raises funds to help develop programs that provide support to patients with SCD
Eligibility
- Anyone who can donate
Location
- Operates nationally
