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.

Next Support Group Meeting – Please note that we have a NEW LOCATION at the Stanford Outpatient Cancer Center located at the address below, about 6 miles from the former location which we have outgrown. If you plan to attend, please RSVP with the number attending no later than Tuesday, April 9th. Our guest speaker is Dr. Michaela Liedtke. Meeting details:

Saturday, April 13, 2019
The Outpatient Cancer Center located at 440 Broadway, Redwood City, Room 2B
10 am – 2 pm
Guest Speaker – Dr. Michaela Liedtke, hematologist from the Stanford Amyloid Center
There will be representatives from the Pharmaceutical companies for hATTR patients
Plenty of free parking and valet service is also available

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.

June 4, 2019
September 3, 2019
December 3, 2019

Center for Advanced Medicine
4921 Parkview Place, 3rd Floor
Farrell Conference Room #1
St. Louis, MO 63110

Contact: Kimberly Gal 314-273-2255

Parking Information

TENNESSEE

Knoxville: Amyloidosis Support Group Spring meeting will be held on Saturday, May 18th, 2019 11:00 am -1:30 pm – Please note: This meeting has been CANCELLED

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.

Vanderbilt Medical Center, CCT (Critical Care Tower)
10th Floor Conference Room
1211 21st Ave S.
Nashville, TN 37212

Next meeting is June 5, 2019

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:

Washington AF Support Group

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

Australia: www.amyloidosis.com.au

Brazil: www.abpar.org.br

Canada: www.thecasn.org

Finland: http://www.suomenamyloidoosiyhdistys.fi/

France: http://www.amylose.asso.fr/

Germany:
https://www.klinikum.uni-heidelberg.de/interdisziplinaere-zentren/amyloidose-zentrum/fuer-patienten/selbsthilfegruppe-amyloidose/

Israel: http://israblog.nana10.co.il/blogread.asp?blog=530202

Israel Facebook: http://www.facebook.com/#!/groups/108804022537602

Italy:
http://www.orpha.net/consor/cgi-bin/SupportGroup_Search.php?lng=IT&data_id=27517&title=AAMI—Associazione-Amiloidosi-Italiana

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

Australia

Princess Alexandra Hospital Amyloidosis Centre (Brisbane)

Westmead Hospital Amyloidosis Clinic (Sydney)

The Victorian and Tasmanian Amyloidosis Service – VTAS Contact email (Melbourne)

Brazil – Center for the Study of Familial Amyloidosis (Rio de Janeiro)

Canada – Princess Margaret Cancer Centre (Toronto)

France – CHU Limoges

Germany – Heidelberg University Hospital

Israel

Rabin Medical Center

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

United Kingdom – National Amyloidosis Centre (London)

Treatment Centers

Brochures

Amyloidosis – Patient Overview

Amyloidosis – Patient Overview (Hebrew)

AL Physician Guide

AL Physician Guide (Spanish)

AL Physician Guide (Portuguese – Portugal)

ATTR Brochure

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.

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)

The Assistance Fund

Patient Access Network Foundation

Alnylam Assist (hATTR hereditary amyloidosis)

Inotersen Expanded Access Program (hATTR hereditary amyloidosis)

Rx Patient Assistance Programs

Partnership for Prescription Assistance

GoodRX

HealthWell Foundation

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

INSURANCE INFORMATION

Amyloidosis & Insurance (webinar)

Link for State Heath Insurance Information

OTHER RESOURCES

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.

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

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.

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.

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.

Binder Introduction Section

2019 Calendar

Section 1 Important Contacts

Section 2 Health History & Labs

Section 3 Medications

Section 4 Charts

Section 5 Resources

Section 6 Q & A

Section 7 Advance Directive

Caregiver Resources Binder