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 Neurogastroenterology and Motility Society (ANMS)
http://www.motilitysociety.org/index.php

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).

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/

IVTEAM (provides news on IV-related issues)
http://www.ivteam.com

LaVie Par Un Fil (French Organization for HomePEN Families)
http://perso.wanadoo.fr/lavieparunfil/          [Try Google Translate]

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          [Try Google Translate]

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/

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

Norwegian Society of Clinical Nutrition and Metabolism
http://www.nske.no              [Try Google Translate]

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

Professional Nutrition Therapists  (Dietetic counseling for patients with digestive disorders and other conditions.   A fee is charged for services. Registered Dietitians are available across the US.)
http://www.foodtherapyrd.com/

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

The Norwegian Association For Home Parenteral Nutrition
http://www.nifo.no                 [Try Google Translate]

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

University of Virginia Health Systems
http://www.healthsystem.virginia.edu/internet/digestive-health/nutrition.cfm

Weaning from Tube Feeding -- Resources for Parents

     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.

    The Life and Times of Stella -- a blog
     http://lifeandtimesofstella.wordpress.com/2010/01/12/meet-fearless-frankie-and-her-parents/

    Tube Fed Kids Deserve to Eat -- a chat forum
     http://tubefedkids.ning.com/

Health Care General Resources

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

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

American Psychiatric Association
http://www.psych.org
(Click on "Mental Health Resource" from their homepage)

American Speech-Language-Hearing Association
http://asha.org

American Self-Help Clearing House (database for support groups)
http://www.mentalhelp.net/selfhelp/

Board of Pharmaceutical Specialists
http://www.bpsweb.org
[Click on the "locate specialists" tab, then search by specialty (nutrition support pharmacy) and location (state).]

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

Compassion & Choices: Support, Educate, Advocate Choice & Care at the End of Life (Includes information and forms for advance directives, living wills, etc.)
http://www.compassionandchoices.org

Cure Hunter (Includes information about diseases, treatments, and research)
http://www.curehunter.com

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

Combined Health Information Database (CHID)
http://www.cehn.org/cehn/resourceguide/chid.html

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

Forms/Blackberry Application to Track Your Meds
http://www.wapatientsafety.org/mymedicinelist/examples.html

Health Care Transition Initiative (Tips for teens transitioning to independent health care)
http://hctransitions.ichp.ufl.edu/gladd/

Healthfinder
http://www.healthfinder.gov/

HealthGrades (Rates physicians, hospitals and nursing homes)
http://www.healthgrades.com/

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

Highwire Press, Standford University Press (Obtain free copies of full-text medical literature)
http://highwire.stanford.edu/

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

IV Team (News and information about IV therapy)
http://www.ivteam.com/

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

Lab Tests Online
http://www.labtestsonline.org/

Medical Air Transport Services
 

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 Digestive Diseases Information Clearinghouse (NDDIC)
http://digestive.niddk.nih.gov/

National Healthcare Decision Day (NHDD)
http://www.nationalhealthcaredecisionday.org

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

National Institute of Mental Health
http://nimh.nih.gov
(Click on "Mental Health Topics" under the "Health and Outreach" category)

NDDIC Easy-to-Read Publications
http://digestive.niddk.nih.gov/ddiseases/ez.asp

New and Used Medical Equipment
http://www.Dotmed.com
http://www.imed.com/

Ontario Canada's Central Line-Associated Primary Bloodstream Infection (Posts CRBSI rates for ICUs by hospital in Ontario)
http://www.health.gov.on.ca/patient_safety/public/cli/cli_pub.html

PubMed, U.S. National Library of Medicine (Search medical literature)
http://www.ncbi.nlm.nih.gov/

Stop Hospital Infections/Safe Patient Project (Find hospital infection rates and other information by selecting your state in the upper right corner)
http://www.safepatientproject.org

The National Institute on Aging
http://www.nia.nih.gov/ 
(Click on "Publications" for information on a variety of health topics)

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

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

Wound, Ostomy & Continence Society
http://www.wocn.org/
(to find a WOC Nurse referral, click on "Patient Referral" and choose "Search for a WOCN member in your area)

Insurance / Disability Benefits & Resources / Prescription Help

Abbott Nutrition Reimbursement Help Line
(800) 558-7677

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

Cobra Health State Law Directory
http://www.cobrahealth.com/statelawdirectory.htm
(some states allow employees to extend COBRA beyond the initial 18 months

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

Food & Drug Administration
        Access to Investigational Drugs
        http://www.fda.gov/ForConsumers/ByAudience/ForPatientAdvocates/AccesstoInvestigationalDrugs/default.htm 

        Brochure "Infusion Therapy - Getting the Most Out of Your Pump 
        http://www.fda.gov/cdrh/CDRHHHC/brochure-infusion.html 

        Dissolution Methods  -- guidelines on how to dissolve different medications  
        http://www.accessdata.fda.gov/scripts/cder/dissolution/index.cfm 

        Drug Shortages Information
        http://www.fda.gov/Drugs/DrugSafety/DrugShortages/ucm050792.htm 

        Medical Device Safety  
        http://www.fda.gov/MedicalDevices/Safety/default.htm 

        Medwatch  
        http://www.fda.gov/medwatch/index.html

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/

Health Insurance Finders
www.healthinsurancefinders.com
(I'd suggest using the top menu on this site--individual, group, etc.--for an overview before you pick your state)

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/

Nestle Nutrition Reimbursement
http://www.nestle-nutrition.com/reimbursement.aspx

Patient Advocate Foundation (PAF)
http://www.patientadvocate.org/      - Web site
http://advocacyforpatients.blogspot.com/   - Blog

Discount/Free Prescription Programs
Partnership for Prescription Assistance (links to multiple prescription programs) https://www.pparx.org/
Discount Medication™ Program http://www.discountmedicationprogram.com/home/
Pfizer Prescription Help http://pfizerhelpfulanswers.com/pages/misc/Default.aspx
FamilyWize Community Service Partnership (Free Card Helps Patients Obtain Discounts on Prescription Drugs) http://www.familywize.org

Reimbursement Tips/Sample Appeal Letters for EN formula - from Nutricia North America
http://www.shsna.com/pages/insurance_info.htm

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

Transplant Financial Resources
http://www.uhmc.sunysb.edu/surgery/transplant/financial.html

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

Disease / Condition Specific Organizations

ALS Association (national)
http://www.alsa.org/

ALS Association of Greater New York Chapter
http://als-ny.org/

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

American Speech Language Hearing Association (home page)
http://www.asha.org/public/speech/ (swallowing/feeding information)

Asbestos.Net (for people with Asbestos related cancer and other diseases such as mesothelioma)
http://www.asbestos.net

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

Campaign Urging Research for Eosinophilic Disorders (CURED)
www.curedfoundation.org/

Cancer Care
http://www.cancercare.org/

Cincinnati Center for Eosinophilic Disorders
www.cincinnatichildrens.org/cced

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

Crohn's and Colitis Foundation of Canada
www.ccfc.ca

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/

Head and Neck Cancer Alliance (formerly the Yul Brynner Foundation)
http://www.headandneck.org

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

Hyperemesis Education & Research (HER) Foundation
http://www.hyperemesis.org

iCan Foundation, Gastroparesis/Dysmotility Research Funding, (ICF)
http://helpforgp.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/

Living with Reflux (LWR) (geared toward pediatric GOR/GER, based in U.K.)
http://www.livingwithreflux.org/index.html

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

Malignant Mesothelioma
http://www.mesotheliomaweb.org/mesothelioma.htm

Mesothelioma Center (information on asbestos-related cancer)
http://www.asbestos.com

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

My Cancer Advisor
www.MyCancerAdvisor.com

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

National Institute of Allergy and Infectious Diseases
http://www.niaid.nih.gov/Pages/default.aspx

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/

Oral Cancer Foundation
http://www.oralcancerfoundation.org

Oral Cancer and Tube Feeding
http://www.oralcancerfoundation.org/nutrition/tube_feeding.htm

Osto Group (offers ostomy products for the uninsured)
http://www.ostogroup.org/

Patient Resource Cancer Guide
http://www.patientresource.net/

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/

Support for People with Oral, Head, and Neck Cancer (SPOHNC)
http://www.spohnc.org

Swallowing -- Nestle Nutrition Enhancing the Quality of Life - Dysphagia Online
http://dysphagiaonline.com

Swallowing -- VitalStim® Therapy
http://www.vitalstim.com

SWAN, Symptoms Without a Name  (Provides support, information, and connections to families of children with undiagnosed medical disorders)
http://www.undiagnosed-usa.org/

Tardive Dyskinesia Center - (Tardive Dyskinesia (TD) is a result of damage to the bodily systems that process dopamine, and is typically caused by exposure to certain medications - including Reglan)
http://www.tardivedyskinesia.com

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 Buddies (Information and support for people who have undergone an organ transplant)
www.transplantbuddies.org

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

ARCH National Respite Network
http://chtop.org/arch.html

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/

The Caregiver's Marketplace (offers rebates on specific products like diapers, formula, skin cream, etc.)
http://www.caregiversmarketplace.com

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

Chai Lifeline (helps children and families suffering from serious illness)
www.chailifeline.org

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

Children's Organ Transplant Association
http://www.cota.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/

Health Care Transition Initiative (Tips for teens transitioning to independent health care)
http://hctransitions.ichp.ufl.edu/gladd/

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

International Foundation for Functional Gastrointestinal Disorders (IFFGD)
http://www.aboutkidsgi.org/site/about-gi-health-in-kids/

KidsHealth for Parents
http://www.kidshealth.org/parent/

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

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

Living with Reflux (LWR) (geared toward pediatric GOR/GER, based in U.K.)
http://www.livingwithreflux.org/index.html

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/

Morgan’s Wonderland – Ultra Accessible Family Fun Park
http://www.morganswonderland.com/index.html

Mothers Against Munchausen by Proxy Allegations
 http://www.msbp.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/

Parent to Parent of New York State
 http://www.parenttoparentnys.org/Family2Family/familytofamily.html

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 Family Caregiver Alliance
http://www.caregiver.org

The Genesis Fund (helps children born in New England with birth defects, genetic disease and mental retardation)
www.thegenesisfund.org

The Little Heros Project (Free professional photography for your chronically-ill child)
http://www.littlestheroesproject.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/

Weaning from Tube Feeding -- Resources for Parents

    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.

    The Life and Times of Stella -- a blog
     http://lifeandtimesofstella.wordpress.com/2010/01/12/meet-fearless-frankie-and-her-parents/

    Tube Fed Kids Deserve to Eat -- a chat forum
    http://tubefedkids.ning.com/

Wish Granting Organizations for Children

Wright-Stuff: Health Care Products to Make Life a Little Easier (commercial site)
http://www.wrightstuff.biz/

Caregiver Resources

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

ARCH National Respite Network
http://chtop.org/arch.html

The Caregiver's Marketplace (offers rebates on specific products like diapers, formula, skin cream, etc.)
http://www.caregiversmarketplace.com

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/

Eldercare Locator
http://www.eldercare.gov

Mothers Against Munchausen by Proxy Allegations
 http://www.msbp.com/

The Family Caregiver Alliance
http://www.caregiver.org

The National Institute on Aging included a list of caregiver resources
http://www.nia.nih.gov/   (Click on "publications")

Visiting Angels
http://www.visitingangels.com/contactus.asp

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

Wish Granting Organizations for Adults

Wish Granting Organizations for the Elderly

Wright-Stuff: Health Care Products to Make Life a Little Easier (commercial site)
http://www.wrightstuff.biz/

Do you have any favorite sites not listed here?

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