Official Website of the Alagille Syndrome Alliance

If you are having problems with insurance coverage for health care and medications, here are some suggestions and a whole bunch of resources to check for getting the most out of your plan:

Family Voices - a grass roots effort speaking on behalf of children with special health needs, has extensive information including insurance assistance. Phone#: 1-888-835-5669 or on the web at http://www.familyvoices.org

HIPAA - Health Insurance Portability and Accountability Act of 1996. Title I of HIPAA protects health insurance coverage for workers and their families when they change or lose their jobs. Information is available at http://www.cms.hhs.gov/HIPAAGenInfo/ The Centers for Medicare and Medicaid Services site also includes information about Medicare, Medicaid, the State Children's Health Insurance Program (SCHIP), and links to other web sites of interest.

Health Insurance Info.Net - has consumer guides for all 50 U.S. states that provide information on getting and keeping health insurance. On the web at
http://www.healthinsuranceinfo.net

S.N.A.P (Special Needs Advocate for Parents) - offers a Medical Insurance Empowerment Program for parents with private medical insurance. This is a helpline
with consultants available to help with insurance questions and suggestions for obtaining coverage from your carrier. www.idealist.org/en/org/33694-294

Make a secure, safe donation to the alliance right now with your credit card. Click the "DONATE" button below to go to our donation page.

NORD (National Organization for Rare Disorders) - Maintains a list of pharmaceutical companies with reduced cost medication assistance programs for those in need.
Check their web site at
http://www.rarediseases.org/programs/medication

Foundation Grants to Individuals - For a subscription price of $9.95 per month, The Foundation Center offers access to a database of foundations and charitable organizations that provide scholarships to individuals. Some of these will cover medical costs. The Foundation Center is located at
http://www.gtionline.fdncenter.org.

Texas Legal Services Center - Publishes a report called "Free and Low Cost
Prescription Drugs" compiled by The Cost Containment Research Institute. Print this report for free at
http://www.tlsc.org/

Metlife - Provides information about planning for future care of a special
child through special needs trusts, survivorship whole life insurance plans,
and other options. Go to http://www.metlife.com and click on "For the Future
of Your Child with Special Needs".

The information presented on this web site is provided for information purposes only. This information does not constitute medical advice and it should not be relied upon as such. The Alagille Syndrome Alliance does not engage in the practice of medicine. Under no circumstances, does the Alagille SyndromeAlliance recommend particular treatments for specific individuals, and in all cases recommends that you consult your physician before pursuingany course of treatment.