Since April of 1992, the Sickle Cell Thalassemia Patients Network (SCTPN) has been providing education, advocacy, referral services, and support for individuals and families living with sickle cell disease, thalassemia (Cooley’s Anemia), and other inherited blood disorders.
Sickle Cell Thalassemia Patients Network (SCTPN) was founded 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.
SCTPN was incorporated in 1993 as a volunteer, not-for-profit organization by adults living with sickle cell disease, thalassemia and other hemoglobin disorders to serve the larger community in an effort to advocate for the under represented.
SCTPN, is a 501 (c)(3) tax-exempt organization, which 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.
Public education programs and webinars are provided to help increase awareness of hemoglobin disorders. These programs also provide non-medical information that empowers individuals to take control of their health and thus enjoy a better quality of life. Advocacy is provided for families as they migrate the sometimes complicated healthcare system. Referrals for related services are also provided.
- To improving the quality of life for individuals and families living with sickle cell disease, thalassemia and other hemoglobin disorders through education, advocacy and support interactions.
- To Create a community where we can share our experiences as a collective to improve and impact the education an awareness of sickle cell disease, thalassemia and other hemoglobin disorders.
The goals of SCTPN’s are to collaborate with other community organizations, healthcare providers as well as public and government agencies to increase public awareness of inherited hemoglobin disorders. We serve as advocates for increase funding to establish more comprehensive treatment programs, and support additional research to find a compassionate cure for all hemoglobin disorders.
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 professionals a forum for interaction among all levels of health care engaged in sickle cell disease management along with the patient, their family, and the community.
Establishing and maintain a strong network of support groups to help families through depression, anxiety, inability to cope with the pain and family dysfunction. Coalition-building between support groups and other community groups. These conditions give our families a broader base of vital assistance they need to cope with all of life’s demands in caring not only for their chronically ill loved one(s), but for the needs of the entire family as well. SCTPN seeks to foster the exchange of experiences, ideas and solutions in supportive settings to reduce feelings of isolation and despair.
Supporting the adoption of statewide protocols for the diagnosis, treatment and management of sickle cell syndromes; the creation of a federal bill for sickle cell; establishing a diverse source of funding to support outreach programs, social services and research.