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Family Registration

If you are a family or friend of a family with MTM and would like to be included in our mailing list and our referral program, please fill out the form below.

What we might do with this information What we won't do with this information
  • Contact you from time to time.
  • Add you to our mailing list (either email or conventional mail).
  • With your permission (checked below), place you in contact with other affected families in your area or with situations similar to yours.
  • With your permission (checked below), place you in contact with people doing research that may be interested in your particular case.
  • Publish statistics on our website based on this data. However, these statistics will be designed to protect the confidentiality of individual respondents.
  • Ask you for money.
  • Supply your name to fundraisers or people selling commercial products.
  • Pass your name or information onto others without your permission.
  • Do anything which might compromise your dignity or your privacy

 

To register with our group, please complete the form below.  After you have completed the form, click on "submit".

Patient's Name:    

Contact Person:  

Address:            

City:                    

State or Province:  Zip or Postal Code:

Country:

Phone: email address:

Answers to the following questions will help us compile statistics on survivability and mortality of this disease.
Patient is   Alive
Deceased

If deceased, patient's age at death

Patient's Birthdate  (dd/mm/yyyy)

  Please check any of the following that apply:

Answers to these questions will help compile statitics on what interventions are necessary and what other associated medical problems may be present.  This information will be helpful to researchers and other families. Tracheostomy Liver problems
Ventilator or bi-pap Blood problems
Wheelchair bound Gall stones
Scoliosis Other, please describe

Please note that all information is confidential and will be released only with your approval. We will never supply your name or any information to fund raisers or sales people.

Check if we have your permission to pass your name on to:
other families  interested researchers

                                                                  Thanks!

                                                                       

 

 

 

 

 

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Copyright © 2000 by the Myotubular Myopathy Resource Group, Inc . Information on this website may be redistributed and copied freely provided that proper attribution is given.  This page was last revised on 06 Sep 1999. The Myotubular Myopathy Resource Group, Inc. is a not-for-profit organization under Section 503(c) of the IRS Code. These World Wide Web pages are published by the Myotubular Myopathy Resource Group, Inc. solely as a service for interested parties. This is a lay interpretation and should not be considered definitive by any means. This discussion draws largely from the sources cited as well as the personal observations of the authors. We are neither doctors nor experts nor do we pretend to be. Any decisions on medical treatments, interventions, courses of action, etc. should be made by the appropriate family members in consultation with the available literature and qualified medical professionals. Good sense should always prevail. The authors, contributors and the Myotubular Myopathy Resource Group, Inc. assumes no responsibility for the use of the information, observations or opinions presented herein.