Patient and Caregiver Resources
For Peer Reviewed Valid Information
PubMed.gov
For Current Clinical Trials
ClinicalTrials.gov
Books and Articles of Interest
- AMY - Where Are We Now and Where Are We Heading?
- Autologous Stem Cell Transplants - Boston Review- Dr. Sanchorawala
- Click Here to Download Dr. Merrill D. Benson's TTR Booklet
- Read the CAP Article "Amyloidosis Hiding In Plain Sight"
- Amyloidosis Overview from DermNet New Zealand
- Video and Pamphlet - www.AmyloidAware.com
Texts about amyloidosis:
- AMYLOID AND RELATED DISORDERS
- AMYLOIDOSIS: DIAGNOSIS AND TREATMENT
- COMPANION TO PERIPHERAL NEUROPATHY
- FREE LIGHT CHAIN PRESENTATION FROM THE BINDING SITE
Other Gathered Resources
- BIOMARKER SPREAD SHEET
- APPEAL - How to Appeal a Denied Claim
- AMYLOIDOSIS AND AGENT ORANGE
- Mayo Clinical Health Oasis
- Boston University Amyloid Treatment & Research Program:
- International Society of Amyloidosis
- Patient Advocate Foundation
Amyloidosis Foundation
- oneAMYLOIDOSISvoice - Amyloidosis Online Community
"Triage Cancer® is a national, nonprofit organization that provides free education on legal and practical issues that may impact individuals diagnosed with cancer and their caregivers, through events, materials, and resources. The Legal & Financial Navigation Program offers one-on-one help with issues such as work, health and disability insurance, finances, and estate planning. CancerFinances.org is an online toolkit to help people manage finances after a cancer diagnosis." TriageCancer.org
- Medicare Coverage of Kidney Dialysis and Kidney Transplant Services
-
Caregiving Resource Center (AARP)
- ORGAN DONATIONS SITE - Matching Donors
- Seeking healthcare in another EU Member State: your rights
- How to Connect Family and Friends When Health Matters
http://www.caringbridge.org/
- WHAT A CAREGIVER NEEDS TO KNOW (pdf)
- The Office of Rare Diseases
(ORD) at the National Institutes of Health (NIH) coordinates research and information on rare diseases at the NIH and for the rare diseases community. The ORD Web site provides information for patients and their families with rare diseases and about NIH- and ORD-sponsored biomedical research and scientific conferences.
- Patient Travel and Resources
Links to charitable or special fare flights to research and treatment sites, hospitality houses for patients and families, and fee-for-service ambulance services.
- Low Cost Medicines
- The Leukemia & Lymphoma Society has also started co-pay assistance
- Gabriel House of Care Mayo Florida
- Planning for Transplant Costs from the National Marrow Donor Program
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
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
