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.
The Resources
Patient Resources
Websites and Support Groups
AMYLOIDOSIS FOUNDATION – AFFILIATED SUPPORT GROUPS
NORTHERN CALIFORNIA
This support group welcomes all patients, families and friends. They meet quarterly. Refreshments provided.
Please contact support group leader, Dena Heath, for more information:
Northern California AF Support Group
Northern California AF Facebook Page
MISSOURI
This support group meets on Tuesdays from 1:00 – 3:00 pm on the following dates in the St. Louis area.
March 10, 2020
June 9, 2020
September 8, 2020
December 1, 2020
Center for Advanced Medicine
4921 Parkview Place, 3rd Floor
Farrell Conference Room #2
St. Louis, MO 63110
Contact: Kimberly Gal 314-273-2255
TENNESSEE
Knoxville:
University of Tennessee Cancer Institute
Building F, Room 300
1924 Alcoa Hwy
Knoxville, TN 37920
Lunch will be provided during the meeting. Please contact our Group Leader, Charlotte Haffner to RSVP or if you need additional information at charhaffner@gmail.com.
Nashville: Amyloidosis Support Group meetings take place the first Wednesday of each month from 12:30pm – 2:30pm. NOTE: Meetings are postponed until further notice.
Vanderbilt Medical Center, CCT (Critical Care Tower)
10th Floor Conference Room
1211 21st Ave S.
Nashville, TN 37212
Please RSVP as we do serve lunch. Contact Charlotte Haffner, Facilitator at 615-347-3961 or charhaffner@gmail.com. Or to register online, click here.
WASHINGTON
This group offers support to anyone affected by amyloidosis. They meet in Seattle throughout the year. Please contact support group leader, Dena Fantle, for meeting dates and more information:
Other U.S. Support Groups
Smart Patients is an online support community for patients and caregivers. Here is a link to the Amyloidosis Foundation page: Smart Patients
The ALECT2 Alliance is a website for patients focused on ALECT2 amyloidosis: ALECT2
A website of other support groups for amyloidosis patients: Amyloidosis Support Groups
INTERNATIONAL WEBSITES & SUPPORT GROUPS
Brazil: www.abpar.org.br
Canada: www.thecasn.org
Finland: http://www. suomenamyloidoosiyhdistys. fi/
France: http://www.amylose.asso.fr/
Israel Facebook: http:// www.facebook.com/ #!/groups/ 108804022537602
Contact: aamiamiloidosi@libero.it
The Netherlands: www. amyloidose.nl
Portugal: http:// www.paramiloidose.com/
Spain: www. idibaps. org/
Sweden: http:// www.igp.uu.se/ research/ clinical_experimental_pathology/ per_westermark/ ?languageId=1
http:// www.famynorrbotten.se/
United Kingdom:
https:// www.ucl.ac.uk/ amyloidosis/ sites/ amyloidosis/ files/ local_amyloidosis_support_groups.pdf
http:// www.myeloma.org.uk/ information/ related-conditions/ al-amyloidosis/
Websites and Support Groups
Treatment Centers
Click here for an international map of treatment centers
USA
ARIZONA
ARKANSAS
CALIFORNIA
Kaiser Permanente San Francisco Medical Center
Scripps Clinic John R. Anderson V Medical Pavilion
Stanford Health Care – Hematology Program
Stanford Hospital & Clinics – Amyloid Center
University of California San Francisco
COLORADO
University of Colorado Hospital
Colorado Blood Cancer Institute
DISTRICT OF COLUMBIA
Georgetown Lombardi Comprehensive Cancer Center
Johns Hopkins Medicine – Kimmel Cancer Center
FLORIDA
The Center for Hematology/Oncology
JFK Medical Center – Main Campus
GEORGIA
IDAHO
St. Luke’s Clinic – Idaho Cardiology Associates
IOWA
University of Iowa Hospitals and Clinics
ILLINOIS
Loyola Center for Health at Burr Ridge
Loyola University Medical Center – Cardinal Bernardin Cancer Center
Northwestern Memorial Hospital
IOWA
KANSAS
Saint Luke’s Hospital of Kansas City
MARYLAND
University of Maryland Medical Center
MASSACHUSETTS
Boston University Medical Center
MICHIGAN
Spectrum Health Hospitals Advanced Heart Failure Clinic
MINNESOTA
MISSOURI
Saint Luke’s Hospital of Kansas City
Washington University School of Medicine in St. Louis
NEW JERSEY
NEW YORK
Columbia University Medical Center
Memorial Sloan Kettering Cancer Center
Sands Constellation Heart Institute – MOB
NORTH CAROLINA
Duke Adult Blood and Marrow Transplant Clinic
Wake Forest Baptist Medical Center
OHIO
The James Cancer Hospital and Solove Research Institute
OREGON
Oregon Health & Science University
Samaritan Hematology & Oncology Consultants
PENNSYLVANIA
University of Pittsburgh Amyloidosis Center
University of Pittsburgh Medical Center Presbyterian
University of Pennsylvania Medical Center
SOUTH CAROLINA
Medical University of South Carolina
TENNESSEEE
University of Tennessee Medical Center
TEXAS
Baylor Scott & White Advanced Heart Failure Clinic – Dallas
University of Texas Southwestern Medical Center
UTAH
University of Utah Amyloidosis Program
VIRGINIA
Virginia Beach (Princess Anne)
WASHINGTON
WISCONSIN
Froedtert Hospital Cancer Center
INTERNATIONAL
Argentina-Hospital Italiano of Buenos Aires
Australia – Australian Amyloidosis Network
Brazil – Center for the Study of Familial Amyloidosis (Rio de Janeiro)
Canada – Princess Margaret Cancer Centre (Toronto)
Germany – Heidelberg University Hospital
Israel – Rabin Medical Center
Israel – Hadassa Medical Center
Italy – Center for the Study and Cure of Systemic Amyloidosis (Pavia)
Japan – Shinshu University School of Medicine (Matsumoto)
Spain – Hospital Puerta de Hierro (Madrid)
The Netherlands – Groningen Unit for Amyloidosis Research and Development
Treatment Centers
Brochures
What to expect at your appointment
Amyloidosis – Patient Overview
Amyloidosis – Patient Overview (Hebrew)
AL Guide (Portuguese – Portugal)
ATTRwt (Wild-type Amyloidosis) – Patient Overview
Brochures
Amyloidosis Foundation Newsletters
Amyloidosis Foundation Newsletters
Webinars
LIGHT CHAIN (AL) AMYLOIDOSIS: WHAT IS AL ANYWAY?
Heather Landau, MD – Associate Attending Physician Memorial Sloan Kettering
PROGRESS IN AMYLOIDOSIS RESEARCH: WHERE ARE WE NOW?
Jeffrey Zonder, MD – Barbara Ann Karmanos Cancer Institute and Wayne State University School of Medicine, Detroit, MI
AMYLOIDOSIS 2030: A SyFy Special
Raymond Comenzo, MD – Tufts University School of Medicine, Boston
ATTRwt Cardiac Amyloidosis
Mat Maurer, MD – New York Presbyterian Hospital and Columbia University Medical Center
Untangling Amyloidosis
Vaishali Sanchorawala, MD and Frederick L. Ruberg, MD – Boston University/Boston Medical Center Amyloidosis Center
The Changing Paradigm of Amyloidosis Treatment
Jeffrey Zonder, MD – Karmanos Cancer Institute, Detroit, MI
TTR Amyloidosis, What Every Patient Must Know
Giampaolo Merlini, MD – University of Pavia, Italy
Amyloidosis 101
Morie Gertz, MD – Mayo Clinic, Rochester
TTR-FAP, The Link Between Neuropathy and Amyloidosis
Courtesy of the Neuropathy Association, Mat Maurer, MD – Columbia University and Michael Polydefkis, MD – Johns Hopkins
Amyloidosis: What You Need To Know
Morie Gertz, MD – Mayo Clinic, Rochester
Diagnosis and Treatment of Amyloidosis
Suzanne Lentzsch, MD PhD – New York Presbyterian Hospital
Cardiac Amyloidosis: What Every Cardiologist Needs to Know
Grand Rounds with Martha Grogan, MD – Mayo Clinic, Rochester
Treatment Options in Cardiac Amyloidosis
Martha Grogan, MD – Mayo Clinic, Rochester
Amyloidosis, Past, Present and Future
Giampaolo Merlini, MD – University of Pavia, Italy
Webinars
Videos
AMYLOIDOSIS MATTERS – DISEASE PRESENTATIONS AND GUIDES FROM THE MYELOMA UK FOUNDATION
The Myeloma UK Foundation has made these videos and guides available to the public through their 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.
Videos
Vietnam Veterans Resources
Veterans and Agent Orange – Approval for Veterans with AL Amyloidosis
Article on Veterans Affairs & Agent Orange Benefits
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.
- Fact Sheet: Veteran Community Care – Eligibility
- Article: New Eligibility Criteria for Community Care, New Urgent Care Benefit and the Sunset of the Veterans Choice
- Fact Sheet: Sunset of Veterans Choice Program
Vietnam Veterans Resources
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 an your family:
RARE Toolkits
Exercise
Exercises for Peripheral Neuropathy
Exercise
Additional Resources
FINANCIAL ASSISTANCE FOR DRUGS
(Click on links below for eligibility requirements and funds availability)
Alnylam Assist (hATTR hereditary amyloidosis)
The Assistance Fund
Good Days
GoodRX
HealthWell Foundation
Inotersen Expanded Access Program (hATTR hereditary amyloidosis)
Needy Meds
Partnership for Prescription Assistance
Patient Access Network Foundation
Pharmaceutical Research and Manufacturers of America
Rx Patient Assistance Programs
SingleCare.com
VyndaLink
GOVERNMENT AGENCIES
The Official US Government Site for Medicare
Social Security Online Link
Veterans and Agent Orange – Approval for Veterans with AL Amyloidosis
Complete Aging Guide for Veteran Seniors
ORGAN FOUNDATIONS AND LINKS
The Liver Foundation
The Foundation for Peripheral Neuropathy
The Kidney Foundation
The National Foundation for Transplants
RESOURCES FOR CAREGIVERS
AARP Resource Center
Caringbridge
Family Caregiver Alliance
Patient Advocate Foundation
USA.gov
INSURANCE INFORMATION
Amyloidosis & Insurance (webinar)
Global Genes booklet “Navigating Health Insurance”
Link for State Heath Insurance Information
Patient Advocate Foundation booklet “Navigating the Insurance Appeals Process
OTHER RESOURCES
Treatment Survival Guide for AL Amyloidosis
A survival guide to help make the process of treatment a little easier for you.
CancerCare
They offer limited financial assistance for cancer-related costs such as transportation and child care, plus oncology social workers to assist with finding resources.
Global Genes
A global rare disease patient advocacy organization.
International Waldenstrom’s Macroglobulinemia Foundation
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.
Hereditary ATTR Amyloidosis
Awareness and education of ATTR amyloidosis.
The Binding Site
Find out more about the Freelite (FLC) Assay Test for AL amyloidosis developed by The Binding Site.
Expanded Access Navigator
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.
Pan Foundation – Fund Finder
List of available funding from different foundations.
Additional Resources
Travel
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.
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.
Corporate Angel Network
Matches cancer patients in need of travel with private corporate jet schedules. Information for patients and potential corporate sponsors.
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.
National Patient Travel Center
A source for long distance medically related travel needs.
Miracle Flights
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.
Travel
Caregiver Resources
Caregiver Resources Binder
CAREGIVER RESOURCES BINDER
This binder was designed by the Amyloidosis Foundation staff, a team who strive to make care giving 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 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 info@amyloidosis.org.
Caregiver Resources Binder
Additional Caregiver Resources
ADDITIONAL RESOURCES FOR CAREGIVERS
AARP Resource Center
Caringbridge
Family Caregiver Alliance
Patient Advocate Foundation
Additional Caregiver Resources
Fundraising Toolkits
Useful guides to help make your fundraising event a success
