Sickle Cell Disease Followup Program


Sickle Cell disease is a common disorder of the red blood cells. It is called “sickle cell disease” because the person’s red blood cells can become shaped like a “sickle” or like the letter “C”. These cells are sticky and rigid, rather than round, soft and smooth, and cannot move easily through the body. Because of their odd shape, they may not be flexible enough to squeeze through small blood vessels and can deprive body parts of oxygen and can cause pain and damage tissues. Sickle Cell is a disease that is inherited, this means that people cannot “catch” the disease from being around others with the disease but is passed genetically from parents to child.
Sickle Cell is a serious disease and can cause complications; your child needs to count on you to make informed and good decisions about their health care. Even as an adult, good decisions and medical follow up will help in decreasing complications and improve your quality of life.
Maryland’s Sickle Cell Follow Up Program follows newborns, children and young adults up to age 18, providing them and their families information about Sickle Cell Disease and other hemoglobin disorders, what to expect from your provider and specialist, guides to living with Sickle Cell disease, and other information pertaining to daycare, school, sports, transitioning to an adult provider, web resources and organizations of interest to persons with Sickle Cell disease. ​
Information on Sickle Cell and other Hematologic Disorders
For Parents

For Providers

The Statewide Steering Committee on Services for Adults with Sickle Cell Disease, which last met in 2009, was a group of sickle cell patients, health care providers, medical insurers, and community representatives, appointed by the MDH Secretary charged with educating Marylanders about SCD and identifying resources and services that could be used to improve the lives of affected residents. 
The following link can be used to access committee information:
During the 2019 legislative session, the steering committee was reformed and will begin regular meetings in December.  Click here for more information on Committee Meetings

Office For Genetics And People With
Special Health Care Needs
201 West Preston Street - Baltimore, MD 21201
Tel (410) 767-6730   Fax (410) 333-5047
 June, 2020



​​​Emergency Guidelines

Go to an emergency room or urgent care facility right away for:
  • Fever above 101° F
  • Difficulty breathing
  • Chest pain
  • Abdominal [belly] swelling
  • Severe headache
  • Sudden weakness or loss of feeling and movement
  • Seizure
  • Painful erection of the penis that lasts more than 4 hours
 Source CDC
  • It is recommended that you inform the first responders of your child's sickle cell status, when using the 911 system, to facilitate appropriate emergency care
'Stay Healthy' Game for Kids
To play game; go to and search for “Stay Healthy” (082714 version) or scan the code below.  Game requires an Xbox game controller.​

Maryland State School Health Services Guideline - ​Management of Sickle Cell Disease in Schools​ 



 National Caregivers Month

Caregiver Summit Flyer.jpg

The Sickle Cell Community Consortium (SC3) is delighted to present our Inaugural Caregiver Summit i​​​n partnership with Elle Cole of Cleverly Changing (Coordinator), the Parent-2-Parent Initiative, and sickle cell community patients and caregivers throughout the country. We invite you to join us for two days of engaging dialogue, dynamic speakers and to hear from innovative voices within the sickle cell community.

 For more information and to register: