Sickle Cell Thalassemia Patients Network (SCTPN) is in the process of enrolling its registry of individuals living with sickle cell. The registry is designed to give members and their family access to resources that were previously beyond reach within the New York City area. We work diligently to add and introduce new services to benefit our members. One of the new services that we are excited to offer our community is Get Connected.
Get Connected is a FREE and confidential National Sickle Cell Patient Registry provided by the Sickle Cell Disease Association of America (SCDAA). SCTPN is working with the Sickle Cell Association of New Jersey (SCANJ) and Queens Sickle Cell Advocacy Network, Inc. (QSCAN )as the community based-organizations (CBO’s) partners for the North East Region on this project. By registering with Get Connected, it ensures that no matter where you go within the United States you will always have access to information about current advocacy initiatives, treatments, therapies and research studies for sickle cell, as well as, having all of your medical information stored in one secure online location. You will also have access to patient providers and experts available in your community and throughout the United States. This allows you, or a hospital that is treating you, to have up-to-date medical data. Other benefits of this registry are newsletters, community forums, and other sickle cell specific information.
Registration is very simple, and below are a few options:
Option 1: Visit www.GetConnectedscd.org
Option 2: Contact us to schedule an appointment for our CHW (David Alexis) to visit you.
Option 3: Visit our local office and we will assist you
After registration, you will receive an approval email link that allows you to go back into the registry to add details on your profile.
*In the “I was referred to Get Connected by” and “Are you a member or affiliated with a local community organization?” sections, please type or select: Sickle Cell Thalassemia Patients Network (SCTPN)
1139 St. Johns Place Brooklyn, NY 11213
David Alexis – firstname.lastname@example.org
Agustina Stephen – email@example.com
Jasmine Robertson – firstname.lastname@example.org
Chauncy Mudayh – email@example.com
Registration Step-By-Step Instructions:
- Click on the ‘GET CONNECTED‘ Button at the bottom
or Go to www.GetConnectedSCD.org
- Click on the Register button.
- Enter your email address, then click Check
- Select how you would like to register:
If you have Sickle Cell Disease or Sickle Cell Trait, click on the “Individual with Sickle Cell Disease or trait“
- Next, choose the group that relates to you.
Are you an adult with Sickle cell disease or trait; or a child under 18yrs with sickle cell disease or trait.
- Then complete the form.
All information on this page is required.
- Under local SCDAA Affiliation, select an answer for Are you a member or affiliated with a local community organization?, Then select Sickle Cell Thalassemia Patients Network (SCTPN) from the drop-down list.
- Read and/or Print the Terms and Conditions, then scroll to the bottom
- Click the Checkbox, I Agree.
- Click on the Join Button to submit your form.
- After completing the form you should get an email from firstname.lastname@example.org
- Follow the prompts in the email to get your temporary password and return to the Get Connected Website.
- You will now be able to create a permanent password.
- Now you’re almost done with the registration process! Sign-in using your email & new password into your own page
- On your Get Connected Page, you can sign-up for updates regarding sickle cell disease & self-care, clinical trial updates, awareness & advocacy, disease & trait research. You can also fill out the remainder of your registry forms.
- After filling out all of the forms and choosing the updates you wish to receive, you have now completed your Get Connected Registration. You can take the information you’ve stored on your page with you and update it at your leisure. This is a patient-powered registry to empower and connect you to the greater sickle cell community and other programs that you may be eligible for.