Patient Resources
US Affiliated Support Groups
Missouri
Center for Advanced Medicine
Dates TBD
Contact: Aleana Evans
(314)273-2255Center for Advanced Medicine
4921 Parkview Place, 3rd Floor
Farrell Conference Room #1
St. Louis, MO 63110
4921 Parkview Place, 3rd Floor
Farrell Conference Room #1
St. Louis, MO 63110
New York
The Weill Cornell Medicine Center
The Weill Cornell Medicine Myeloma Center holds free myeloma support group meetings virtually on the 2nd and 4th Tuesday of every month from 1:00-2:00 pm. These groups can offer patients a safe and supportive environment to connect with fellow myeloma patients and learn new information on managing health and concerns associated with the disease. You can find additional information about upcoming meetings on our social media channels, as well as by calling the Myeloma Center or asking your providing physician.
To register for the group, please email Chelsea Cerillo, LCSW at
[email protected]Northern California
Northern California AF Support Groups
This support group welcomes all patients, families, and friends. They meet quarterly. Refreshments provided.
Link to Support GroupsTennessee
Nashville Support Group Meeting
When: June 7th, 2025 11:30 am CT
Location: Connor's Steak & Seafood 1916 Galleria Blvd, Franklin TN
Speakers:
Dr. Anthony Langone, Nephrology, VAMP
Dr. William Schaffner, Infectious Disease
Courtney Thompson, Clinical Nutrition
Andrew Mardis, BridgeBio
Meeting includes lunch at no cost to you. Please bring a guest or two so we can continue to spread the word. Knowledge is power.
Location: Connor's Steak & Seafood 1916 Galleria Blvd, Franklin TN
Speakers:
Dr. Anthony Langone, Nephrology, VAMP
Dr. William Schaffner, Infectious Disease
Courtney Thompson, Clinical Nutrition
Andrew Mardis, BridgeBio
Meeting includes lunch at no cost to you. Please bring a guest or two so we can continue to spread the word. Knowledge is power.
US Treatment Centers
Arizona
University of Arizona – Banner-University Medical Center Phoenix/Heart InstituteMayo ClinicUniversity of Arizona – Banner-University Medical Center Tucson
California
California Pacific Medical Center – San FranciscoCedars-Sinai HospitalCity of HopeKaiser Permanente San Francisco Medical CenterScripps Clinic John R. Anderson V Medical PavilionStanford Health Care – Hematology ProgramStanford Hospital & Clinics – Amyloid CenterUC San Diego HealthUniversity of California San Francisco
District of Columbia
Georgetown Lombardi Comprehensive Cancer CenterJohns Hopkins Medicine – Kimmel Cancer Center
Florida
Cleveland Clinic – Weston, FLJFK Medical Center – Main CampusMayo Clinic FloridaMoffitt Cancer Center
Illinois
Loyola University Medical CenterNorthwestern Memorial HospitalRush University Medical GroupUniversity of Chicago
Massachusetts
Boston University Medical CenterBrigham & Women’s HospitalLahey Hospital and Medical CenterTufts University
Michigan
Henry Ford Health SystemKarmanos Cancer CenterSpectrum Health Hospitals Heart & Vascular CareUniversity of Michigan
New York
Columbia University Medical CenterMemorial Sloan Kettering Cancer CenterMount Sinai HospitalNYU Langone HealthRoswell Park Comprehensive Cancer CenterSands Constellation Heart Institute – MOBUniversity of Rochester Medical Center
North Carolina
Duke Adult Blood and Marrow Transplant ClinicLevine Cancer InstituteUniversity of North CarolinaWake Forest Baptist Medical Center
Pennsylvania
Allegheny General HospitalUniversity of Pennsylvania Medical CenterUniversity of Pittsburgh Amyloidosis CenterUniversity of Pittsburgh Medical Center Presbyterian
South Carolina
Medical University of South CarolinaPrisma Health Carolina Cardiology Consultants - Greenville
International Support Groups
International Treatment Centers
Vietnam Veterans Resources
Veteran Community Care
The new Veteran Community Care program provides Veterans with a greater choice over their health care, and allows VA to deliver world-class, seamless customer service either through a VA facility or community provider.
Vietnam Veterans Resources Veterans and Agent Orange – Approval for Veterans with AL Amyloidosis
RARE Toolkits
RARE Toolkits
The Amyloidosis Foundation is a member of the Global Genes Foundation Alliance. They have generously agreed to allow us to share a link to their RARE Toolkits.
These provide individuals with usable information on a variety of topics related to living with and/or advocating for rare disease patients. RARE Toolkits are created in collaboration with key rare disease stakeholders that have developed a vast array of subject matter expertise and believe in the importance of sharing these best practices.
Please use these resources to help you and your family:
RARE ToolkitsThese provide individuals with usable information on a variety of topics related to living with and/or advocating for rare disease patients. RARE Toolkits are created in collaboration with key rare disease stakeholders that have developed a vast array of subject matter expertise and believe in the importance of sharing these best practices.
Please use these resources to help you and your family:
Travel
Air Charity Network
Air Charity Network is a charitable organization that provides access for people in need who are seeking free air transportation to specialized health care facilities or distant destinations due to family, community, or national crisis.
AMR Air Ambulance
AMR Air support team is on call 24 hours a day, seven days a week. They provide a safe and professional environment for patient transfer, as well as online medical control. Highly trained and certified nurses, paramedics, respiratory therapists, and physicians are available 24 hours a day to safely transport and meet the needs of every patient population.
Miracle Flights
Founded in 1985, Miracle Flights assures families with limited financial resources that their sick child is not without options. Children in need of out-of-state medical care or second opinions may be eligible to receive air travel assistance through Miracle Flights, at no cost and as many times as needed.
Mercy Medical Airlift
Provides information about all forms of charitable, long-distance medically-related transportation and provides referrals to all appropriate sources of help available in the national charitable medical transportation network.
Corporate Angel Network
Matches cancer patients in need of travel with private corporate jet schedules. Information for patients and potential corporate sponsors.
Patient Airlift Services
Patient AirLift Services (PALS) arranges free air transportation for individuals requiring medical diagnosis, treatment or follow-up, for compassionate assistance, for military personnel/family requests through the PALS for Patriots Program, or for humanitarian purposes through the PALS Sky Hope Disaster Relief Program.
Hope Lodge – Boston
Is a program of the American Cancer Society that offers a safe, supportive, and self-sufficient home away from home for those in active outpatient amyloidosis and cancer treatment.
Additional Resources
Genetic Testing Information
(Click on links below for genetic testing information )
Financial Assistance for Drugs
(Click on links below for eligibility requirements and funds availability)
Government Agencies
Organ Foundations and Links
Resources for Caregivers
Insurance Information
Other Resources
- Explore new patient-focused resources created by the American Society of Gene and Cell Therapy about FDA-approved GeneTherapy and more research being done in clinical trials to potentially treat ATTR Amyloidosis.
- Learn more about ATTR amyloidosis, how to get a diagnosis and additional resources.
- An online community for patients and families
- The Amyloidosis Channel - explore the latest updates, including expert interviews, features, podcasts and e-learning
- List of available funding from different foundations.
- Expanded Access (EA) may be considered for patients who have exhausted their treatment options and are not eligible for, or able to participate in, a clinical trial.
- Find out more about the Freelite (FLC) Assay Test for AL amyloidosis developed by The Binding Site.
- Awareness and education of ATTR amyloidosis.
- Waldenström’s Macroglobulinemia (WM) is a cancer of the lymphatic system and is a type of lymphoma. For some patients, complications of Waldenström macroglobulinemia may result in amyloid deposits.
- A global rare disease patient advocacy organization.
- They offer limited financial assistance for cancer-related costs such as transportation and child care, plus oncology social workers to assist with finding resources.
- A survival guide to help make the process of treatment a little easier for you.
Caregiver Resources
Caregiver Resources Binder
This binder was designed by the Amyloidosis Foundation staff, a team that strives to make caregiving easier for caregivers and patients. Each section has links to PDF files that are designed so that you can print your own copy and keep it in a 3 ring binder to take with you to doctor’s appointments. If you do not have access to a printer, we will mail you an assembled binder. Just email your request for a binder to:
[email protected].