- Websites and Support Groups
Websites and Support Groups
AMYLOIDOSIS FOUNDATION – AFFILIATED SUPPORT GROUPS (USA)
Missouri
Center for Advanced MedicineThis support group will meet from 1:00 – 3:00 pm on the following dates in the St. Louis area.
June 5th, 2023
Contact: Aleana Evans (314)273-2255
Center for Advanced Medicine
4921 Parkview Place, 3rd Floor
Farrell Conference Room #1
St. Louis, MO 63110New York
The Weill Cornell Medicine CenterThe Weill Cornell Medicine Center holds free amyloidosis support group meetings virtually every month. These groups are led by a medical oncology social worker, as well as Dr. Cara Rosenbaum. Zoom links will be provided after registering.
Upcoming Meetings – Zoom
Monday, October 16th 4:00 pm - 5:00 pm
To register for the group, please email or call Chelsea Cerillo, LCSW at [email protected] – (646)276-3677
View the FLYER here
Northern California
Northern California AF Support GroupThis support group welcomes all patients, families, and friends. They meet quarterly. Refreshments provided.
Please contact the support group leader, Dena Heath, for more information:
Tennessee
Nashville Support Group MeetingWhen: December 2nd, 2023
More details TBD
RSVP to Adrienne Molteni at [email protected] or 615-497-1770
University of Tennessee Cancer InstituteBreakfast will be provided during the meeting.
University of Tennessee Cancer Institute
Building F, Room 300
1924 Alcoa Hwy
Knoxville, TN 37920INTERNATIONAL WEBSITES & SUPPORT GROUPS
Brazil
Finland
France
Germany
Ireland
Italy
New Zealand
Portugal
Spain
Sweden
The Netherlands
United Kingdom
- Treatment Centers
Treatment Centers
UNITED STATES
Arizona
Arkansas
California
Colorado
Connecticut
District of Columbia
Florida
Georgia
Idaho
Illinois
Indiana
Iowa
Kansas
Kentucky
Louisiana
Maryland
Massachusetts
Michigan
Minnesota
Mississippi
Missouri
New Jersey
New York
North Carolina
Ohio
Oregon
Pennsylvania
South Carolina
Tennessee
Texas
Utah
Virginia
Washington
Wisconsin
INTERNATIONAL
Argentina
Australia
Brazil
Canada
France
Germany
Israel
Italy
Japan
Spain
The Netherlands
United Kingdom
- Clinical Trials
Clinical Trials
- Brochures
Brochures
- AL Guide (3.48 MB)
- Amyloidosis – Patient Overview (582.22 KB)
- ATTR Brochure (1.66 MB)
- What to expect at your appointment (67.07 KB)
- Amyloidosis Foundation Newsletters
Amyloidosis Foundation Newsletters
- Webinars
Webinars
Heather Landau, MD - Memorial Sloan Kettering Cancer Center - New York, NY
Frederick L. Ruberg, MD, Omar K. Siddiqi, MD, K. H. Vincent Lau, and Michelle Kaku, MD – Boston Medical Center/Boston University – Boston, MA
Jeffrey Zonder, MD – Barbara Ann Karmanos Cancer Institute and Wayne State University School of Medicine, Detroit, MI
Mathew S. Maurer, MD – Columbia University Irving Medical Center, New York, NY
Heather Landau, MD – Associate Attending Physician Memorial Sloan Kettering, New York, NY
Jeffrey Zonder, MD – Barbara Ann Karmanos Cancer Institute and Wayne State University School of Medicine, Detroit, MI
Raymond Comenzo, MD – Tufts University School of Medicine, Boston
Mat Maurer, MD – New York-Presbyterian Hospital and Columbia University Medical Center
Vaishali Sanchorawala, MD and Frederick L. Ruberg, MD – Boston University/Boston Medical Center Amyloidosis Center
Morie Gertz, MD – Mayo Clinic, Rochester
Suzanne Lentzsch, MD PhD – New York Presbyterian Hospital
Giampaolo Merlini, MD – University of Pavia, Italy
Courtesy of the Neuropathy Association, Mat Maurer, MD – Columbia University and Michael Polydefkis, MD – Johns Hopkins
Morie Gertz, MD – Mayo Clinic, Rochester
Grand Rounds with Martha Grogan, MD – Mayo Clinic, Rochester
Martha Grogan, MD – Mayo Clinic, Rochester
Giampaolo Merlini, MD – University of Pavia, Italy
Heather Landau, MD – Memorial Sloan Kettering, New York, NY
Jeffrey Zonder, MD – Karmanos Cancer Institute, Detroit, MI
- Videos
Videos
AMYLOIDOSIS MATTERS – DISEASE PRESENTATIONS AND GUIDES FROM THE MYELOMA UK FOUNDATIONThe Myeloma UK Foundation has made these videos and guides available to the public through its website.
The Amyloidosis Foundation supports the excellent AL Amyloidosis disease information provided through the Myeloma UK Foundation. However, please note that some of the drugs, tests, treatment, and clinical trials that are mentioned in this information may not be available outside of the UK and may differ from country to country.
- Vietnam Veterans Resources
Vietnam Veterans Resources
Veteran Community CareThe 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.
- RARE toolkits
RARE toolkits
RARE ToolkitsThe 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:
- Exercise
Exercise
- Additional Resources
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
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.
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.
- Travel
Travel
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.
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.
A source for long-distance medically related travel needs.
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.
Matches cancer patients in need of travel with private corporate jet schedules. Information for patients and potential corporate sponsors.
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.
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.
Caregiver Resources
- Caregiver Resources Binder
Caregiver Resources Binder
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].
- Introduction (2.35 MB)
- 2023 Calendar (293.65 KB)
- Important Contacts (336.65 KB)
- Health History & Labs (658.44 KB)
- Medications (1.54 MB)
- Charts (1.38 MB)
- Resources (612.39 KB)
- Q & A (921.26 KB)
- Advance Directive (996.36 KB)
- Miscellaneous (738.97 KB)
- Additional Caregiver Resources
Additional Caregiver Resources
ADDITIONAL RESOURCES FOR CAREGIVERS