For Patients and Families

AllAboutBleeding.com
A site about vonWillebrand's disease by Aventis Behring
www.allaboutbleeding.com

American Heart Association
General heart health information; has a link specifically about children
www.americanheart.org

American Kidney Fund
Provides financial assistance, education, research and programs for patients with kidney disease
www.akfinc.org

American Liver Foundation
General liver health info; search by state
www.liverfoundation.org

American Lung Association
General lung health information
www.lungusa.org

Asperger's Association of New England
Provides information, advocacy, resources, and support groups for people with Asperger's
www.aane.org

Autism Resources
Resource list for people with Autism or Asperger's
www.autism-resources.com

The Aventis Behring website
Offers a link to the Patient Assurance program (through the patients and families link); can enroll if using Aventis products
www.aventisbehring.com

Children's Liver Association for Support Services
All-volunteer, nonprofit organization dedicated to serving the emotional, educational, and financial needs of families coping with childhood liver disease and transplantation
www.classkids.org

Children with Diabetes
On-line community for kids, families and adults with diabetes
www.childrenwithdiabetes.com

Cystic Fibrosis Foundation
Information and resources for people with CF
www.cff.org

Forum of End Stage Renal Disease Networks
Nonprofit organization that advocates on behalf of its membership and coordinates projects and activities of mutual interests to ESRD Networks
www.esrdnetworks.org

Hemophilia Galaxy
Baxter website which offers a link to the Baxter Assist program; can enroll if using a Baxter product
www.hemophiliagalaxy.com

Joslin Diabetes Center
Works to improve the lives of people with diabetes and its complications through innovative care, education and research that will lead to prevention
and cure of the disease
www.joslin.harvard.edu

Juvenile Diabetes Research Foundation International
Supports research in search of cure of diabetes and its complications; includes site for children with diabetes
www.jdf.org

The Kidney Advocate
Site offers information about kidney disease, advocacy, resources and support services
www.kidneyadvocacy.50megs.com

Kidney Information Clearinghouse
Resource database for patients with renal disease
www.renalnet.org

LA Kelley Communications
A comprehensive hemophilia resource for educational resources, scholarship programs and a parent empowerment newsletter (PEN)
http://kelleycom.com

Little Hearts, Inc.
Provides support, resources, networking, and hope to families affected by congenital heart defects
www.littlehearts.net

The National Hemophilia Foundation (NHF)
General information as well as a wonderful resource for free literature (HANDI) on blood clotting disorders
www.hemophilia.org

National Kidney Foundation
General information on kidney health, resources for patients and providers
www.kidney.org

National Organization for Rare Disorders
Maintains database of resource/support organizations for rare disorders, as well as providing information about the disorder; also has medication assistance programs
www.rarediseases.org

The New England Hemophilia Association (NEHA)
The local chapter of NHF; can become a member at no charge. NEHA's focus is education and advocacy
www.newenglandhemophilia.org

Second Wind
Information and support for lung transplant patients and families
www.2ndwind.org

Shemophilia.com
A web site for women with inherited bleeding disorders
www.shemophilia.org

United Network for Organ Sharing
Organization which works to promote organ donation and matches donors to transplant patients
www.unos.org

The World Federation of Hemophilia
International organization which offers a listing of hemophilia centers throughout the world
www.wfh.org