OMS Manual/Chapter 21

CHAPTER 21 - FEDERAL, LOCAL, and PRIVATE ORGANIZATIONS PROVIDING ASSISTANCE Description 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 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/ * ****** Legal Services * 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 * ****** Special Services to Bring a Smile to an OMS warrior 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 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