ABOUT US

GOALS | PROGRAMS AND SERVICES

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.

MISSION

SCTPN is dedicated 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. SCTPN also provides referral to resources that will help diminish the negative emotional, psychological, social and economic impact of these debilitative conditions.

GOALS

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.

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