International Association for Food Protein Enterocolitis

Resources

Support Groups

A number of support groups related to Food Protein-Induced Enterocolitis Syndrome and food allergies are available online. Membership is required for most groups. IAFFPE does not own, endorse or otherwise support any one group. We recommend caution when obtaining medical advice from non-medical professionals. As always, all healthcare decisions should be discussed with your physician.

IAFFPE provides updates and educational materials on our Facebook page. You can also connect with other FPIES families online. Please visit our link at .

In the upcoming months, IAFFPE will be providing national and regional support groups for families and patients affected by FPIES. To start or join an IAFFPE support group in your area, please contact us at .

Travel Assistance for Medical Care and Flight Sources

National Patient Air Transport HELPLINE:

Angel Flights:

Angel Flight America:

Air LifeLine:

Air Care Alliance:

Corporate Angel Network:

Hope Air (CANADA):

Mercy Medical Airlift:

Miracle Flights for Kids:

Continental Care Force: (Bob Jack)

Delta SkyWish:

American Airlines Miles For Kids in Need:

Southwest Airlines (Civic and Charitable Contributions Dept):

Air Travel

View a list of TSA Permitted and Prohibited Items

Accommodations/Lodging

Ronald McDonald House Charity

Ronald McDonald Houses provide temporary housing for families traveling with children for pediatric medical care. RMH are near many major medical centers. For more information or to find a RMH, visit the Ronald McDonald House Charity website.

National Association of Hospital Hospitality Houses (NAHHH)

Office: 828-253-1188
Toll-Free:

Bridgestreet Accommodations

This is a corporate housing company. All of the accommodations are fully furnished 1, 2 or 3 bedroom apartments and are not necessarily near a hospital. However, if ground transportation is available, for the long-term stay, they are excellent. Bridgestreet has some contracts with various hospitals around the country for discounts to traveling families. Please inquire as to whether they have availability at your required destination.

Phone:

Formula Coverage Assistance

Ross (EleCare) Review of Formula Coverage

http://abbottnutrition.com/Our-Products/Medicare-and-Medicaid.aspx

Ross Patient Assistance Program

http://www.needymeds.com/papforms/rosmed0407.pdf

http://www.rxhope.com/papinfo/company/pdf/RossMetabolic.pdf

SHS/Nutricia Neocate Patient Assistance

http://www.neocate.com/aaa_neocate/0,534,112,97,236,0,0-179-77.ashx

SHS/Nutricia Sample Physician Letter for Coverage and Information

http://www.shsna.com/pages/neocate_junior_ins_letter.htm

Medication Assistance

Patient Assistance: HelpingPatients.org

Patient Assistance Number to Glaxco:

Grants for Medical Services

The United Healthcare Children’s Foundation is offering support to meet the needs of children nationwide with assistance grants for medical services not fully covered by health insurance.

Parents and caretakers across the country will be eligible to apply for grants of up to $5,000.00 for health-care services that will help improve their children’s health and quality of life. For more information, please visit www.uhccf.org.

Related Organization Links

All organizations listed are Section 501c3 nonprofit organizations.

AFA Allergy and Asthma Foundation of America

AANMA Asthma and Allergy Network, Mothers of Asthmatic

ALERT American Latex Allergy Association

American Partnership for Eosinophilic Disorders (APFED)

ausEE, Inc. Australian Support Network for Eosinophilic oEsophagitis and related disorders

CCED Cincinnati Center for Eosinophilic Disorders

CCFA — Crohn’s and Colitis Foundation of America

CDF — Celiac Disease Foundation

Children’s Magic

CSSA — Churg Strauss Syndrome Association

CVSA — Cyclic Vomiting Syndrome Association

FAAN — Food Allergy and Anaphylaxis Network

GIRF — Gastrointestinal Research Foundation

GPDA — Gastroparesis and Dysmotility Association

HES — Hyper Eosinophilia Syndrome

IDF — Immune-Deficiency Foundation

IFFGD — International Foundation for Functional Gastrointestinal Diseases

Kids With Food Allergies

National Eosinophilia Myalgia Syndrome Network

NEASE — National Eczema Association for Science and Education

NORD — National Organization for Rare Diseases

Oley Foundation

PAGER — Pediatric/Adolescent Gastroesophageal Reflux Association

PAK — Protect Allergic Kids

Food Allergy Initiative

Links of Professional Associations

Pediatrics

American Academy of Pediatrics (AAP)

Gastroenterology

American Gastroenterology Association (AGA)

North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN)

American Society for Gastrointestinal Endoscopy (ASGE)

National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

Allergy and Immunology

American Academy of Allergy, Asthma and Immunology (AAAAI)

American College of Allergy Asthma and Immunology (ACAAI)

National Institute of Allergy and Infectious Diseases (NIAID)

Nutrition

American Nutrition Association

American Dietetic Association

Pathology

Society for Pediatric Pathology (SPP)

American Society for Clinical Pathology (ASCP)

US Canadian Academy of Pathology

Students with Chronic Illness

Guide for Families, Schools and Students

* Reproduced with permission from the American Partnership for Eosinophilic Disorders, © APFED www.apfed.org. This page may not be reproduced in whole or in part without written permission from APFED.