Links to Other Organizations

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 Nutrition (ASN)
http://www.nutrition.org/

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

Association for Vascular Access (AVA); formerly NAVAN
http://www.avainfo.org/
          AVA's Save that Line Campaign  
          Patient Guide to choosing and living with a Central Venous Access Device (CVAD).

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

Dietitians in Nutrition Support
http://www.dnsdpg.org/

European Society for Parenteral & Enteral Nutrition (ESPEN)
http://www.espen.org/

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

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

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

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

Lifeline Foundation and Parenteral Nutrition in Poland
http://www.idn.org.pl/liniazycia/toppage1.htm

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.

North American Society for Pediatric Gastroenterology Hepatology and Nutrition (NASPGHAN)
http://www.naspghan.org/

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

Society of Interventional Radiology
http://www.sirweb.org/

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

University of Virginia Health Systems
http://www.uvadigestivehealth.org/

Health Care General Resources

American Academy of Pediatrics
http://www.medicalhomeinfo.org/

American Dietetic Association
http://www.eatright.org/

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

Information on Clinical Trials and Human Research Studies
http://clinicaltrials.gov/ct/gui

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

Food & Drug Administration Medwatch
http://www.fda.gov/medwatch/index.html

Healthfinder
http://www.healthfinder.gov/

Healthopedia.com website offers images of the human digestive system and certain conditions that afflict it.
http://www.healthopedia.com/pictures/gastrointestinal-images.html

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

Jackson Peg Tube Stands
http://www.jacksonpegtubestands.com/

Medical Air Transport Services:
http://www.airlifeline.org/
http://www.patienttravel.org/
     Northwest Airlines KidCares
http://www.nwa.com/corpinfo/aircares/about/kidcares.shtml
   
Medical Home Initiatives for Children with Special Needs
http://www.medicalhomeinfo.org/

Medical Industry Supplier Registry (Use to find manufacturers of medical equipment)
http://www.medicregister.com/

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

A Consumer Guide to Handling Disputes with Your Employer or Private Health Plan, 2005 Update
http://www.kff.org/consumerguide/7350.cfm

Advocacy for Patients with Chronic Illness, Inc.
http://www.advocacyforpatients.org/

Affordable Health Insurance (Canadian Members Only)
http://www.health-insurance-help.com/

Centers for Medicare and Medicaid Services
http://www.cms.hhs.gov/

Children's Milk Allergy and Gastrointestinal Coalition (MAGIC) advocating for insurance reimbursement for formula.
http://www.childrensmagic.org

Digestive Disease National Coalition (DDNC)
http://www.ddnc.org/

First Hand Foundation
http://www.firsthandfoundation.org

Frequently Asked Questions Regarding HPN Reimbursement (from NHIA)
http://www.nhianet.org/faqs.cfm#faq11

Health Care Financing Administration (HCFA)
http://www.os.dhhs.gov/about/opdivs/hcfa.html

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

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

Medicaid: State by State Descriptions & Plans
http://64.82.65.67/medicaid/states.html

Medicare
http://www.medicare.gov/
      Medicare Appeals Process  http://www.medicare.gov/basics/appeals.asp

National Health Law Program (NHeLP)
http://www.healthlaw.org/

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

Resources for Children with Special Needs, Inc.
http://www.resourcesnyc.org/

Schwablearning.org - Information on tax credits for dependents with disabilities, including conference-related expenses.
http://www.schwablearning.org

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

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

Tips for Writing a Winning Appeal Letter (From Complex Child E-Magazine web site)
http://www.articles.complexchild.com/00012.html

Disease / Condition Specific Organizations

American Cancer Society
http://www.cancer.org/

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

American Partnership for Eosinophilic Disorders
http://www.apfed.org/ee.htm

Association of Gastrointestinal Motility Disorders, Inc. (AGMD)
http://agmd-gimotility.org

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/
    CCFA Camp Oasis  http://www.ccfa.org/kidsteens/camp

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/

European Digestive Motility Centre
http://www.digestive-motility.org/

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

Gastroparesis and Dysmotilities Association (GDPA)
http://www.digestivedistress.cm/index.htm

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

Help for Irritable Bowel Syndrome (IBS)
http://www.helpforibs.com/

International Adhesions Society (has support groups and product information, not specific to abdominal adhesions)
http://www.adhesions.org/

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

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

Intestinal Pseudo-Obstruction
http://www.ki.se/medhs/gastro/psob/

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

Major Aspects of Growth in Children (MAGIC)
http://www.magicfoundation.org

Mitochondrial Disease Action Committee
http://www.mitoaction.org

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://rarediseases.info.nih.gov/

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/

Rett Syndrome
http://www.K12academics.com/rettsyndrome.htm

Russell Silver Syndrome
http://russell-silversupport.com

SAFE, Inc. (supporting Autism & Families)
http://www.autismsafe.org/

Scleroderma Foundation
http://www.scleroderma.org/

The Guardian Society (support for motility disorders)
http://www.theguardiansociety.org/
Note: Works in Netscape but not Internet Explorer.

The National Foundation of Swallowing Disorders
http://www.dysphagiafoundation.org

The Pull-thru Network  (organized as a chapter of the United Ostomy Association in 1988 by a group of families whose
children were born with an anorectal malformation).
http://www.pullthrough.org/

VacterL Network
http://www.vacterlnetwork.org/default.asp

The Vater Connection
http://www.thevaterconnection.com/index.asp

Transplant Living
http://www.transplantliving.org/

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

United Network for Organ Sharing
http://www.unos.org/

United Ostomy Associations of America, Inc.        
http://www.uoaa.org/

Resources for Parents

Bandaides and Blackboards
http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/

Canyon Ranch (Resort for chronically ill youth late teens, early 20's)
http://www.dreamstreetfoundation.org/

CCFA Camp Oasis
http://www.ccfa.org/kidsteens/camp

Children's Medical Organizer
http://www.childrenshc.org/cmo/

Children's Milk Allergy and Gastrointestinal Coalition (MAGIC) advocating for insurance reimbursement for formula.
http://www.childrensmagic.org

Complex Child E-Magazine
http://www.ComplexChild.com

Double H Hole-in-the-Woods Ranch (summer camp that accepts kids on HPEN)
http://www.doublehranch.org/

Dream Magazine (from Children's Hospital Boston)
http://www.childrenshospital.org/dream/

Exceptional Parent Magazine
http://www.exceptionalparent.com/

Family Voices
http://www.familyvoices.org/

First Hand Foundation
http://www.firsthandfoundation.org

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

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

The Hovannesian Feeding Foundation
http://www.feedingfoundation.org/index.html

Kids with Tubes
http://www.kidswithtubes.org/

Kids on Wheels
www.kidsonwheels.us/cool_kids.cfm

Make-A-Wish Foundation (Grants wishes for chronically ill children)
http://www.wish.org/

Mealtime Notions (includes feeding tips, products; a charge for some resources)
http://www.mealtimenotions.com/

Mobility Ball (designed to carry enteral feeding pump and formula for crawlers and new walkers)
http://www.keenerkidz.com/

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

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

Northwest Airlines KidCares
http://www.nwa.com/corpinfo/aircares/about/kidcares.shtml

Parent Educational Advocacy Training Center
http://www.peatc.org/

SNAP Online
http://www.snapinfo.org/

Starlight Children's Foundation
http://www.starlight.org

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

The Painted Turtle (offers summer camp experience for kids with IBD)
http://www.thepaintedturtle.org/turtle

Tummy Tunnels (The iron on patch that provides access to g-tubes without damage to clothing)
http://www.tummytunnels.com/

Caregiver Resources

AARP's Caregiving Webplace
http://www.aarpmagazine.org/family/Articles/a2003-02-25-meformeresources.html

Caregiver Survival Resources (charges fees for some services)
http://www.caregiver911.com/

Care giving Online (charges fees for some services)
http://www.caregiving.com/landing.cfm?loc=index.cfm

Caregiver Network
http://www.caregiver.on.ca/

Caring from a Distance (for long distance caregivers)
http://www.cfad.org/

Well Spouse Foundation
http://www.wellspouse.org/

Do you have any favorite sites not listed here?

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