For Patients and Families
Illness & Diagnosis
This section includes websites about specific illnesses and diagnoses.
AllAboutBleeding
A site about vonWillebrand's disease by Aventis Behring
American Heart Association
General heart health information; has a link specifically about children
American Kidney Fund
Provides financial assistance, education, research and programs for patients with kidney disease
American Liver Foundation
General liver health info; search by state
American Lung Association
General lung health information
Asperger's Association of New England
Provides information, advocacy, resources, and support groups for people with Asperger's
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
Children with Diabetes
On-line community for kids, families and adults with diabetes
Cystic Fibrosis Foundation
Information and resources for people with CF
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
Hemophilia Galaxy
Baxter website which offers a link to the Baxter Assist program; can enroll if using a Baxter product
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
Juvenile Diabetes Research Foundation International
Supports research in search of cure of diabetes and its complications; includes site for children with diabetes
LA Kelley Communications
A comprehensive hemophilia resource for educational resources, scholarship programs and a parent empowerment newsletter (PEN)
Little Hearts, Inc.
Provides support, resources, networking, and hope to families affected by congenital heart defects
The National Hemophilia Foundation (NHF)
General information as well as a wonderful resource for free literature (HANDI) on blood clotting disorders
National Kidney Foundation
General information on kidney health, resources for patients and providers
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
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
Second Wind
Information and support for lung transplant patients and families
United Network for Organ Sharing
Organization which works to promote organ donation and matches donors to transplant patients
The World Federation of Hemophilia
International organization which offers a listing of hemophilia centers throughout the world
