Links to other Organizations & Resources

Following is a list of websites homePEN consumers and clinicians may be interested in visiting. The Oley Foundation does not endorse these websites or their sponsoring organizations and cannot be responsible for information they contain. As with any information found on the internet we strongly suggest you discuss it with an appropriate professional before making any changes in your health care, insurance coverage, home care supplier etc.

American Gastroenterology Association (AGA)
http://www.gastro.org

American Society for Clinical Nutrition (ASCN)
http://www.faseb.org/ascn

American Society for Parenteral & Enteral Nutrition (A.S.P.E.N.)
http://www.clinnutr.org

Gastrohep.com (access to some information requires $100 subscription)
http://www.gastrohep.com

Infusion Nurses Society (INS)
http://www.ins1.org

League of Intravenous Therapy Education (LITE)
http://www.lite.org

National Association of Vascular Access Networks (NAVAN)
http://www.navannet.org

New - National Board of Nutrition Support Certification (NBNSC)
http://www.nutritioncertify.org

National Home Infusion Association (NHIA)
http://www.nhianet.org

Nat'l Institute of Diabetes & Digestive and Kidney Diseases
http://www.niddk.nih.gov

New Visions (workshops on oral feeding skills)
Leslie France at New Visions
(424) 361-2285
http://www.new-vis.com
E-mail: leslie@new-vis.com.

Health Care General Resources

Center for Disease Control
http://www.cdc.gov

Combined Health Information Database (CHID)
http://www.chid.nih.gov

Free Online Access to Medical Articles (Medline)
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi

Healthfinder
http://www.healthfinder.gov

Integrative Medicine (a website about herbs, botanicals, vitamins, etc)
http://www.mskcc.org/aboutherbs

Medical Air Transport Services:
http://www.airlifeline.org/
http://www.mercymedical.org

National Center for Complementary and Alternative Medicine
http://nccam.nih.gov

National Institute of Health
http://health.nih.gov

US Department of Health and Human Services
http://www.hhs.gov

US National Library of Medicine
http://www.nlm.nih.gov

Insurance / Disability Benefits & Resources

Family Voices
http://www.familyvoices.org

Florida Institute for Child Health Care Policy
http://www.ichp.edu

Health Care Financing Administration (HCFA)
http://www.hcfa.gov

Health and Human Services
http://www.os.dhhs.gov

Health Care Transitions
http://hctransitions.ichp.edu

Health Insurance Resource Center (includes links to information on high-risk health insurance pools)
http://www.healthinsurance.org

Medicare
http://www.medicare.gov

National Information Center for Children and Youth (NICHCY)
http://www.nichcy.org

National Parent Network on Disabilities
http://www.npnd.org

Patient Advocate Foundation (PAF)
http://www.patientadvocate.org

Social Security Administration
http://www.ssa.gov

Social Security Work Site
http://www.ssa.gov/work

Disease / Condition Specific Organizations

American Liver Foundation
http://www.liverfoundation.org or http://sadieo.ucsf.edu/alf/alffinal/

American Pseduo-Obstruction & Hirschsprung's Disease Society, Inc.
http://www.tiac.net/users/aphs/
Email Address: asapgi@srynet.com

Cancer Care
http://www.cancercare.org

CP Parent Home Page
http://www.cpparent.org

Crohn's and Colitis Foundation of America
http://www.ccfa.org

Cyclic Vomiting Syndrome Association
http://www.cvsaonline.org

Dysautonomia Foundation, Inc.
http://www.familialdysautonomia.org

EA/TEF Children & Family Support Connection
http://www.eatef.org

Familial Dysautonomia Hope (FD Hope)
http://www.fdvillage.org

Gastroparesis
http://www.gpda.net

Gastroparesis Patient Association for Cures & Treatments, Inc. (G-PACT)
http://www.g-pact.org

International Foundation for Functional GI Disorders (IFFGD)
http://www.iffgd.org

Irritable Bowel Disease Page
http://www.panix.com/~ibs/

Lance Armstrong Foundation for Cancer Patients, Caregivers and Survivors
(includes links to nutrition information under "Suvivorship/Resources")
http://www.laf.org

List of Rare Diseases
http://www.rarediseases.info.nih.gov/ord/diseases.html

National Disease Centered Organizations
http://dir.yahoo.com/health/diseases_and_conditions/organizations

National Organization for Rare Disorders (NORD)
http://www.rarediseases.org/

Office of Rare Disorders
http://www.rarediseases.info.nih.gov/ord/

Organic Acidemia Association
http://www.oaanews.org

Pediatric/Adolescent Gastroesophageal Reflux Association (PAGER)
http://www.reflux.org

Pediatric Crohn's & Colitis Association
http://pcca.hypermart.net

The National Eosinophilic Enteritis Disease (NEED) Foundation
http://c4isr.com/NEED

The Vater Connection
http://www.vaterconnection.org

United Mitochondrial Disease Foundation
http://www.umdf.org

United Ostomy
http://www.uoa.org

Coping / Support

Ask Audrey/Coping with Chronic Illness
http://www.chronicillness.com

Canadian Parenteral-Enteral Nutrition Association
http://www.cpena.ca
info@cpena.ca

LaVie Par Un Fil (French Organization for HomePEN Families
http://perso.wanadoo.fr/lavieparunfil/
(you can click on english Translation if needed)

Mothers United for Moral Support, Inc.
http://www.netnet.net/mums/

National Coalition for Cancer Survivorship
http://www.cansearch.org

PINNT (British Organization for HomePEN Consumers)
http://www.pinnt.com

Support for Adult Sibling/Child Siblings of People with Special Needs
http://www.thearc.org/siblingsupport

The Swedish Society for HPN, Children & Youth
http://www.dataphone.se/~hpn/index.htm

Please let us know.