RESOURCE CENTER
Resources
Advocacy and mediation for individuals and families with health care professionals, employers, educational institutions and legislators.
Referral for qualified physicians, hospitals, support groups and other resources are available.
Emergency Family Fund offers financial support for individuals and families to address needs not supported by other existing social service agencies.
Email us for more information info@sctpn.net or call (347) 533-8485 or Monday to Friday, 10:00 am to 6:00 pm.
Web Resources
New York Area
- Parent To Parent, Metro New York (www.parenttoparentnys.org)
- National Library of Medicine (http://www.nlm.nih.gov/portals/public.html)
- New York Association of Black Psychologist (http://www.uh.edu/bapsiuh/id2.html)
- New York City Council (https://council.nyc.gov/)
- New York Blooding Disorders Coalition (nysbdcoalition.org/)
- Dr. Ashwin Vasan – https://www1.nyc.gov/site/doh/about/about-doh/the-commissioner.page
- Patient & Purpose (https://www.patientsandpurpose.com/)
- New York State Assembly (http://nysassembly.gov)
- New York State Senate (https://www.nysenate.gov/)
- U.S. House of Representatives (https://www.govtrack.us/congress/members/NY)
- New York State Minority Health Council (https://www.health.ny.gov/community/minority/council.htm)
- New York Housing Authority – My NYCHA Self-Portal (https://www1.nyc.gov/site/nycha/section-8/self-service.page)
- Human Resource Administration – Access HRA (https://a069-access.nyc.gov/accesshra)
- New York Cares (https://www.newyorkcares.org/?gclid=Cj0KCQiA15yNBhDTARIsAGnwe0WALldDJwtf-YzqAV4Z9WHnAP7KZypZaq8OYSMD…)
BLOOD, BONE, MARROW & STEM CELLS DONATION
Transplantations save lives, but only if you help. All you need to do is say yes to blood, tissue, organ, marrow and stem cell donation on your donor card and/or state driver’s license and discuss your decision with your family and doctor.
The New York Blood Center (NYBC) can help ensure that people who are chronically transfused (e.g. sickle cell disease, thalassemia, leukemia, etc.) will have access to blood products precisely matched to each person whenever they need it. For additional information call NYBC at: 800-993-2526 or visit: https://nybloodcenter.org/.
Individuals living with thalassemia and many with sickle cell disease (a large number of the recipients being children) require regular blood transfusions to maintain good health. Hospitals specializing in the treatment of hemoglobin disorders have access to NYBC product services.
- Precise Match Blood and Blood Product Donations
- Be the Match – Tissue and Organ donation
National Agencies
- American Disabilities Act (ADA) (https://www.ada.gov/)
- American Society of Gene & Cell Therapies (https://www.asgct.org/)
- Food & Drug Administration (FDA) Office of Minority Health (https://fda.gov/minorityhealth)
- FDA Statement – Center for Biologics Evaluation and Research (CBER) (https://fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm629493.htm)
- Inspire Social Network for Health (http://Partners.Inspire.com)
- NIH Office of Rare Disease Research (https://rarediseases.info.nih.gov)
- Rare Army – Advocacy Leaders (https://rare.army)
- Rare Diseases (www.rarediseases.org)
- Youth Adult Representatives for Rare Disease (YARR) https://everylifefoundation.org/young-adult-representatives/
- National Institute of Health/National Heart Lung Blood Institute (NIH/NHLBI)
Information and resources for inherited blood disorders and other rare diseases.
National Sickle Cell CBOs
- Candice Sickle Cell Fund, Bronx, NY (candicessicklecellfund.org/)
- Fallen Angels Sickle Cell Foundation, Rockland County, NY (http://fallingangelsscf.org/)
- Sickle But Not Broken, Las Vegas, NV (https://www.facebook.com/Sicklednotbroken/)
- Sick Cells, Chicago, IL (https://www.sickcells.org/)
- Sickle Cell Disease Association of America, Hanover, MD, (http://sicklecelldisease.org)
(http://sicklecelldisease.org)
- Sickle Cell 101 (https://www.sc101.org/)
- Sickle Cell Disease Foundation of California (https://www.scdfc.org/)