• Low Cost Medicines
• NORD's Medication Assistance Programs
• Celgene Patient Support Solutions or call 1-888-423-5436
• Several Co-Pay foundations may also assist with drug expense, like Chronic Disease Fund
• The Leukemia & Lymphoma Society has also started co-pay assistance

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

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

Chronic Disease Fund Inc.
1-877-968-7233
www.cdfund.org

HealthWell Foundation
1-800-675-8416
www.healthwellfounation.com

Patient Access Network Foundations (PANF)
1-866-316-7263
www.patientaccessnetwork.org

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

Patient Services, Incorporated (PSI)
1-866-366-7741
www.uneedpsi.org

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

www.freemedicineprogram.org

www.freemedicine.com

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

International Myeloma Foundation
1-800-452-2873
www.myeloma.org
See also the Myeloma Manager™ Personal Care Assistant™ Software program

Multiple Myeloma Research Foundation
(MMRF)
www.multiplemyeolma.org

Multiple Myeloma Forums
Andrew Smith Andy@myelomaforums.com

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

The Combined health Information Database (CHID)
*choose the medical genetics and rare diseases sub file
http://chid.nih.gov/simple/simple.html

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

Computer Retrieval of Information on Scientific Projects (CRISP)
http://crisp.cit.nih.gov/crisp/crisp/_query.generate_screen

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

LOCATING SUPPORT ORGANIZATIONS:

Genetic Alliance Online Resource Directory
http://www.geneticalliance.org/diseaseinfo/search.html

National Organization of Rare Disorders (NORD) Organizational Database
http://www.rarediseases.org/search/orgsearch.html

Kansas University Medical Center Genetic and Rare Conditions Information Site
http://www.kumc.edu/gec/support/

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

As I experienced for myself, while undergoing high dose chemo and auto stem cell transplantation last year, mental abilities such as attention, memory, problem solving or reasoning are affected, to various degrees by treatment for amyloidosis or myeloma. This "chemo brain", or "chemo fog" as it is sometimes called, is a very troubling side effect.

Luckily, teaching cognitive strategies is what I do as part of my non-profit therapy center called Purpose, addressing not only the side effects of chemo brain, but also cognitive issues in neurological diseases such as MS, Parkinson's, Alzheimer's etc.

Purpose is located Culver City, California and our classes for cognitive strategies are on a sliding scale or free-of-charge. This is my way of helping the Southern California amyloidosis community. But if don't live in So. Cal, and you wish to have more info, please visit our website at http://www.purposetherapy.org/Purpose/Welcome.html or write to me at info@purposetherapy.org

Once again thanks so much for setting up today's meeting and the continued support for patients with amyloidosis.

Licia C. Paskay MS, CCC-SLP, COM

• "The Social Security and Supplemental Security Income disability programs are the largest of several Federal programs that provide assistance to people with disabilities... "