ASG Ribbon Logo Amyloidosis Patient Registry
Amyloidosis Support Groups
We are a phone call or email away!
TOLL FREE HELP/HOT LINE: 866-404-7539
EMAIL: Info@amyloidosissupport.org

Patient and Caregiver Resources

For Peer Reviewed Valid Information
PubMed.gov

For Current Clinical Trials
ClinicalTrials.gov

put in key words (i.e. amyloidosis and _____)


Other Gathered Resources


The list below has sites that have been published on reputable sites. However - there are some that are completely free so it is suggested you go with them before one that asks you to pay a fee. www.pparx.org is the main site for all the pharmaceutical companies under one umbrella - it is reputable, comprehensive and free.


PATIENT ASSISTANCE PROGRAMS

Programs/Charities for accessing medicines, reimbursement support, or co-pay assistance


Patient Advocate Foundation
421 Butler Farm Road
Hampton, VA 23666
PAF Financial Resources
Telephone: 800-532-5274
Hours: Monday-Thursday 8:30 - 5pm; Friday 8:30-4pm EST
Email: help@patientadvocate.org


Patient Access Network (PAN) Foundation
PO Box 30500
Bethesda, MD 20824
PAN Assistance Programs
Telephone: 866-316-7263
Email: info@panfoundation.org


The Assistance Fund
4700 Millenia Blvd., Suite 410
Orlando, FL 32839
https://tafcares.org/patients/
Telephone: 855-512-2801
Hours: Monday-Friday 9am - 6pm EST, excluding holidays
Online Chat Available


Partnership for Prescription Assistance (PPARx)
PPARx is an organization that helps patients who don't have a prescription drug plan and cannot afford their medicine
1-800-447-2669
www.pparx.org


My Medicare Matters
1-800-633-4227
www.mymedicarematters.org


Good Days
1-877-968-7233
www.mygooddays.org


Patient Advocate Foundation C0-Pay Relief
1-866-512-3861
www.copays.org


RX Assist
10401-729-3284
www.rxassist.org


www.freemedicineprogram.org


PATIENT ADVOCACY ORGANIZATIONS

Aplastic Anemia and MDS International
Foundation Inc. (AAMDS)
1-800-747-2820
www.aamds.org


American Cancer Society
1-800-227-2345
www.cancer.org


Multiple Myeloma Research Foundation
(MMRF)
http://www.themmrf.org/


Myelodysplastic Syndromes Foundation
1-800-637-0839
www.mds-foundation.org


For Medicine through Clinical Trials
www.clinicaltrials.gov


FINDING INFORMATION ABOUT A DISEASE OR CONDITION

National Institutes of Health (NIH)
http://www.nih.gov/icd/


MEDLINEplus (a service of the National Library of Medicine and the NIH)
http://www.medlineplus.gov


Genetics Home Reference (a service of the National Library of Medicine)
http://ghr.nlm.nih.gov


Gene Tests
http://www.genetests.org


Clinical Research Studies Protocol Database at NIH
http://clinicalstudies.info.nih.gov


General Information about clinical studies (Warren grant Magnuson Clinical Center at NIH)
http://www.cc.nih.gov/participate.shtml


LOCATING SUPPORT ORGANIZATIONS:

You may also contact the Genetic and Rare Diseases (GARD) Information Center, a service launched by the National Human Genome Research Institute and the Office of Rare Diseases at the NIH to provide free and immediate access to accurate, reliable information about genetic and rare diseases. Experienced information specialists are available to answer questions by telephone and TTY, email, fax and letter. Telephone and TTY calls are answered Monday through Friday from noon to 6:00 p.m. eastern time.

Toll Free: 888-205-2311
TTY: 888-205-3223
Fax: 240-632-9154
Email GARDinfo@nih.gov
Mail: P.O. Box 8126 Gaithersburg, MD 20898-8126


Cancer Hope Network
877-467-3638
Connect with others for one on one support

The Official U.S. Government Site for People with Medicare: http://www.medicare.gov/

Social Security Online: http://www.ssa.gov/disability/
"The Social Security and Supplemental Security Income disability programs are the largest of several Federal programs that provide assistance to people with disabilities... "


The Leukemia and Lymphoma Society (LLS) provide assistance (including financial help) for people with Primary (AL) Amyloidosis. Put in your zip code and find your local rep.


FISCAL YEAR ENDS JUNE 30....

LLS Co-Pay Assistance Program: The Leukemia & Lymphoma Society's Co-Pay Assistance Program offers assistance to patients with lymphoma, myeloma, AML, CLL, Waldenstrom Macroglobulinemia, and MDS who are at or within 500% of the federal poverty level. It offers assistance to patients toward private health insurance premiums, private insurance co-pay obligations as well as Medicare Part B or D, Medicare Supplementary Health Insurance and Medicare Advantage. Call toll free 877-557-2672 or go to www.LLS.org/copay for more information.


The International Myeloma Foundation: http://www.myeloma.org/


Also see ASH's Patient Resource page and Find a Hematologist Web site


The Waldenstrom’s Macroglobulinemia Foundation Support Meetings


American Medical Association Home Page


FDA SITE: http://www.fda.gov/default.htm


Medline Plus: What Is Bereavement?


Although the magazine "Cure" was designed for cancer patients, there are many interesting article about food, alternative medicine, coping etc....As long as one checks with their doctor before attempting any of the suggestions, the magazine looks like a wonderful addition to the support area. See www.curetoday.com as the magazine is FREE to Cancer Patients, Survivors and Care Givers and the Leukemia and Lymphoma Society umbrellas Amyloidosis as a "Blood Cancer"...it is a stretch and for those not wishing to make the stretch the cost is $20.00 annually...


Modern Healthcare Online: http://www.modernhealthcare.com


News from Where Did Mommy's Superpowers Go? -- Book Updates


Substance Abuse and Mental Health Treatment Facility Locator
Patient Travel - Northeast


FREELITE (FLC) BINDING SITE FOR AL AMYLOIDOSIS