Resources

Some helpful links, and a little advice

The Nick Teddy Foundation does not offer medical advice at any time.

 

We strongly urge you to seek treatment at a facility that SPECIALIZES in Ewing’s sarcoma, but cannot recommend one doctor or institution over another.  Your best advice for any decision will come from your healthcare team, and your institution’s social services departments.

Local Sarcoma Centers/Programs
Clinical trials current Feb 2017

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University of Iowa Hospitals and Clinics

U of I Stead Family Children's Hospital 

Iowa City, IA

Clinical trials at U of I

Robert H Lurie Cancer Center

Northwestern University

225 E. Chicago Avenue, Chicago, IL 60611

Clinical trials at Lurie

Children’s Hospital of Illinois

at OSF St. Francis Medical Center

St. Jude's Research Hospital

Midwest Affiliate

800 NE Glen Oak Avenue

Peoria, IL 61603

Clinical trials at CHI

Mayo Clinic

Rochester, MN

Clinical trials at the Mayo Clinic 

General Information

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National Clinical Trials

Cancer Watch Clinical Trials Search 

Cancer Commons

help with clinical trials, referrals

Amschwand Sarcoma Cancer Foundation 

very good comprehensive list of resources

 

R.A. Bloch Cancer Foundation

Rein in Sarcoma

 

Cure Search coping with cancer page

Sarcoma Alliance

lots of information on trials and specialist treatment

Cancer Support Community

 
A Little Advice

We do offer these tips on issues that are common sources of confusion, misunderstanding, and heartache:

 

  Seek a second opinion whenever possible 

You have the right to request one, and your health care team will know how to help you get one.

 Familiarize yourself with the Patient Rights and Responsibilities information

provided to you by your hospital or clinic 

 Take it seriously.  Ask lots of questions.  Pain, discomfort, and anxiety should be addressed and adequately managed.

 

Speak up if something is not right, or you don't understand what is happening 

Your health care team is human. Sometimes mistakes happen, things get overlooked, or communication is not clear.

Caregivers want to do their best, and they can't improve if they don't know where deficiencies lie.

 

 If all else fails, tell your team you want to talk to the Patient Advocate 

Nowadays, nearly every major hospital has one.

Patient Advocates are professionals with experience in both advanced medical practice and conflict resolution.

Patient Advocates really do listen, and they really do get things done. Let them be your voice.

 

More information about patient advocates

Nick Teddy Foundation

P.O. Box 133

Port Byron, IL 61275

402-657-4939

foundation@nickteddy.org

We are a 501 (c)(3) organization

@Nick Teddy Foundation

#NickTeddyOrg

#BeatEwingsSarcoma