ABOUT US

MISSION

SCTPN is dedicated to improving the quality of life for individuals and families living with sickle cell disease, thalassemia and other inherited blood disorders through education, advocacy and support interactions. SCTPN seeks to diminish the negative social, psychological, and economic impact these debilitative disorders have on our community.

ABOUT US

Sickle Cell/Thalassemia Patients Network (SCTPN) began in 1989 at Brooklyn Jewish Hospital (now known as Interfaith Medical Center) located in Brooklyn, NY,as an adult and parent support group for individuals with inherited blood disorders.

Sickle Cell Thalassemia Patients Network (SCTPN) was incorporated in 1993 as a volunteer, not-for-profit organization by its founding members (adults living with sickle cell disease, thalassemia and other hemoglobin disorders) to serve the larger community by providing a face and a voice for these under represented health issues.

SCTPN, a 501 (c)(3) tax-exempt organization, provides education, advocacy, referral services, and support for individuals and families living with sickle cell disease (SCD), thalassemia (Cooley’s Anemia), and other inherited blood disorders.

SCTPN provides scholarships to young adults with SCD to assist them with college expenses. We also provide public education programs to help increase awareness and knowledge of hemoglobin disorders. We serve as advocates/liaisons for families and healthcare professionals at hospitals, throughout the New York Tri-State area, that provide comprehensive care for sickle cell disease and coordinate referrals to needed services. SCTPN is committed to helping diminish the negative social, psychological, and economic impact of these debilitative disorders on our community.

GOALS

To collaborate with other community organizations, healthcare providers as well as public and government agencies to increase public awareness of inherited blood disorders.
To advocate for increased funding to establish more comprehensive treatment programs throughout New York State, support additional research to find more effective medicinal therapies and treatment to manage the chronic symptoms of SCD and related complications.
To support research to find a viable cure for all people living with hemoglobin disorders.
To build a strong coalition of organizations, agencies and other stakeholders that will allow for the expansion of our collective missions and visions.

We are committed to the following:

Advocate for the expansion of the New York State Newborn Screening Program and Public Testing including identifying trait status in children, adolescents and young adults not born in New York State.
Make Genetic Counseling available with family planning.
The development of additional Comprehensive Medical Care programs for adults with sickle cell disease.
Improved Diagnostic Methods for detecting associated complications and increased psychological and social support services.
Encouraging academic excellence in children and young adults living with sickle cell disease and other hemoglobin variants through tutorial services, achievement awards and college scholarships.
Providing a forum for interaction with professionals at all levels of health care, who are engaged in the diagnosis and health management of people living with blood disorders, their families, and the community.
SCTPN seeks to foster the exchange of experiences, ideas and solutions in supportive settings to reduce feelings of isolation and despair by establishing and maintaining a strong network of support groups to help families through their inability to cope with depression, anxiety, and family dysfunction caused by physical and emotional pain.
SCTPN seeks to foster the exchange of experiences, ideas and solutions in supportive settings to reduce feelings of isolation and despair by establishing and maintaining a strong network of support groups to help families through their inability to cope with depression, anxiety, and family dysfunction caused by physical and emotional pain.
Supporting the adoption of statewide protocols for the diagnosis, the passing of the 2019 NYS Sickle Cell Disase Treatment Act (A6493) and (S2281), and the appropriation of $3 million to fund the establishment of 8 Comprehensive Treatment Centers throughout NYS; and the adoption of the federal bill for sickle cell; establishing diverse source of funding to support outreach programs, social services,and research.

Website Privacy Policy for The Sickle Cell Thalassemia Patients Network

The Sickle Cell Thalassemia Patients Network is committed to maintaining the privacy of our website visitors and donors and to maintain the confidentiality of all personal Information.

The personal information you provide to us is solely utilized to receive and process your donation or to process any information requests you may have. Donor anonymity is always respected.

The Sickle Cell Thalassemia Patients Network does not sell, rent, or trade consumer mailing lists. *
Your personal information is kept in a private database located in our office.
Upon request, we will allow you full access to your information and we will maintain its accuracy according to your instructions.
The Sickle Cell Thalassemia Patients Network keeps donors informed about how donations are used and how crucial these contributions are to ensuring the ongoing success of our programs.
In addition to sending out direct mailings to encourage donor support, we also execute several major fundraising events each year to accomplish our goals.
Most Sickle Cell Thalassemia Patients Network supporters wish to receive all of our

Mailings and newsletters. However, if you no longer wish to receive these mailings, you may contact us with your request to opt-out at any time.
Comments or questions regarding The Sickle Cell Thalassemia Patients Network’s Privacy

Policy should be directed to:
Email: gstephen@sctpn.net
Phone: (718) 533-8485
Mail: The Sickle Cell Thalassemia Patients Network, Inc.

1139 St. Johns Place, Brooklyn NY 11213-2617
*Unless required by law.