OMS Manual/Chapter 21
CHAPTER 21 - FEDERAL, LOCAL, and PRIVATE ORGANIZATIONS PROVIDING ASSISTANCE
Description
[edit | edit source]Many private organizations are willing to lend assistance to our OMS warriors. The services can include help in acquiring medicines that have been denie by insurance, flights to hospitals, financial assistance, birthday cakes, and assorted other things. This chapter is intended to provide information to families regarding those services provided by private organizations.
Medical Assistance and Services
[edit | edit source]This section is intended to provide information to families regarding medical services available.
* National Organization for Rare Diseases - NORD
http://www.rarediseases.org
* Transition from Pediatric to Adult Medical Health Care
http://www.gottransition.org
* General Health Information
http://www.health-ed.com
* Children's Defense Fund
http://www.childrensdefense.org/child-research-data-publications/data/state-data-repository/children-in-the-states.html
* Financial Assistance for Cancer Patients
http://www.thenccs.org/page.aspx?pid=652
* Free Airflight to Medical Facilities Information
http://www.ped-onc.org/resources/airlineflights.html
* Assistive Technology / Mobility
http://www.lionsclubs.org/EN/our-impact/lions-in-action/moving-forward.php
* Needy Meds - A resource to help you find assistance on medicines such as traazadone or ADHD medicines.
http://www.needymeds.org/index.htm
* Patient Services Inc -
https://www.patientservicesinc.org
* Baxter (IVIG) Therapeutic Play Kit - You can request a therapeutic play kit through this link. It provides an IVIG teddy bear among other books and ‘supplies’ to help your child understand the medical process. The bear is named Igi. You can also request by calling: 1-855-250-5111
http://www.immunedisease.com/help-and-support/baxter-resources/therapeutic-play-kit.html
* Saatkamp Communications - Parenting,
movement, and nutrition education online for the special needs community. -
http://saatkampcommunications.com/training/parenting-movement-nutrition/
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Legal Services
[edit | edit source]* ACCESS - Advocating for Chronic Conditions, Entitlements and Social Services (A.C.C.E.S.S.®) is a program dedicated to helping find solutions to the social and economic problems that confront families facing chronic conditions.
http://www.patientservicesinc.org/For-Patients/ACCESS
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Special Services to Bring a Smile to an OMS warrior
[edit | edit source]This section is intended to provide information to families regarding services provided by agencies who want to spread a little happiness to these OMS warriors via gifts and events.
GENERAL INFORMATION:
* Make a Wish
http://www.ped-onc.org/cfissues/maw.html
* Icing Smiles - An Organization Dedicated to Making Birthday Cakes for OMS Kids
http://icingsmiles.org/
Other Services
[edit | edit source]This section is intended to provide information to families regarding other information that may assist in caring for the OMS patient.
* Neuroblastoma/Childhood Cancer:Pediatric-Oncology Resource Center
http://www.ped-onc.org/diseases/neuro.html
* Diseases Database you can link to publications, drugs used for treatment, etc
http://www.diseasesdatabase.com/search_engines.asp?strUserInput=Opsoclonus%2Dmyoclonus+syndrome