September is Sickle Cell Awareness Month: Spotlight on SCTPN

September is Sickle Cell Awareness Month: Spotlight on SCTPN

September ushers in a crucial period for raising awareness about the most prevalent rare disease affecting hundreds of millions globally: sickle cell disease.

Sickle Cell/Thalassemia Patients Networks, Inc. (SCTPN) stands at the forefront of this advocacy, dedicated to improving the lives of individuals impacted by inherited blood disorders, sickle cell disease, and thalassemia. With a mission rooted in advocacy, education, and support services, SCTPN brings hope to people and families navigating these conditions.

MISSION AND VISION: EMPOWERING LIVES THROUGH COMPASSIONATE SUPPORT

SCTPN’s mission is to enhance the quality of life for individuals and families affected by sickle cell disease and thalassemia. This mission is achieved through comprehensive programs that provide essential services, promote health equity, and foster a supportive community. At the heart of SCTPN’s vision is the belief that every person with sickle cell disease (SCD) or thalassemia (Cooley’s Anemia) deserves a life filled with dignity and opportunity. Founded by adult advocates living with SCD/Thal and their primary providers in 1985, SCTPN has grown into a robust network that addresses the multifaceted needs of these communities. The organization’s vision extends beyond its geography, aiming to eradicate the health disparities associated with sickle cell worldwide through education, research, and policy advocacy.

COMPREHENSIVE SERVICES: FROM ADVOCACY TO EDUCATION

SCTPN offers services to support individuals with sickle cell disease or thalassemia at every stage. These services include:

• Patient Advocacy: SCTPN assertively advocates for patients’ rights and access to high-quality care. This includes assistance with navigating healthcare systems, securing necessary treatments, and ensuring that patient’s voices are heard in policy discussions.

• Educational Programs: Knowledge is power, and SCTPN empowers SCD/Thal families through educational workshops and the dissemination of resources. These programs cover topics from disease management, mental health support, and information on novel therapies to ensure that individuals have the information they need to make informed decisions about their care.

• Support Groups: Living with a chronic condition can be isolating; SCTPN’s support groups provide a safe environment where individuals and families can share their experiences, offer mutual support, and build lasting connections.

• Community Outreach: Committed to raising awareness about SCD/Thal in the broader public SCTPN spreads vital information and reduces the stigma associated with hemoglobinopathies through health fairs, public speaking engagements, and partnerships with other organizations.

• Research and Policy Advocacy: SCTPN is deeply involved in research initiatives to improve treatments and find universal, compassionate cures for sickle cell disease and thalassemia. Additionally, the organization advocates for policies that promote health equity, improve access, and make care affordable for all individuals affected by these conditions worldwide.

A GLOBAL IMPACT: EXTENDING SUPPORT BEYOND BORDERS

While SCTPN’s roots are planted in Brooklyn’s local community, its reach extends far beyond. The organization collaborates with international partners to address the global impact of sickle cell disease and thalassemia. These partnerships facilitate the exchange of knowledge, resources, and best practices, ensuring that advancements in care and treatment benefit people globally.

One of the organization’s notable international initiatives is its collaboration with healthcare providers and advocacy groups in Africa, where the prevalence of sickle cell disease is exceptionally high and Central America. It is working to

build collaborations with India, the second-largest population with these hemoglobinopathies. By working together, they aim to improve access to public screening, genetic counseling, newborn screening, comprehensive treatment, and support for individuals living with these disorders in these regions.

JOIN THE MOVEMENT: MAKE A DIFFERENCE THIS SEPTEMBER

September is a time for awareness, action, and support. SCTPN invites everyone to join the movement and take action this Sickle Cell Awareness Month by participating in volunteer opportunities. Whether you attend a workshop, join a support group, or volunteer with one of our NYS-wide events, your involvement can impact the lives of those affected by sickle cell disease and thalassemia.

You can help break the sickle cycle by donating at SCTPN.net/ donations-sctpn. Join the fight and become a volunteer; visit SCTPN.net to learn more.