Resources

This page will be an ongoing work in progress.  We hope to add new categories and new listings frequently.  If you have any recommendations for our Resources list, please email us at mhecoalition@gmail.com.

 

Please note that the following are not member organizations of the MHE Coalition.  Links are provided for groups and organizations that may be of interest to our members, but our organization does not endorse any of these groups or organizations,and we are not responsible for the information contained in their pages, websites, etc. As always, we recommend that you consult with your physician regarding treatment options.

 

 

International MHE Organizations

 

Australia

MHE for Aussies

https://www.facebook.com/groups/187166979593/

 

Canada

MHE and Me Canada

http://www.mheandmecanada.com/

https://www.facebook.com/groups/MHEandMeCanada/

 

England/United Kingdom

UK HME Support Group

https://www.facebook.com/groups/155586107845125/

 

Italy

Esostosi Multipla Ereditaria

https://www.facebook.com/events/360326917484728/

 

Netherlands

For Adults:

https://www.facebook.com/groups/hmemovereniging/

 

For Children:

HME-MO Vereniging (jeugd)

 

Norway

MHE prateside

https://www.facebook.com/groups/65358920960/

 

Poland

https://www.facebook.com/Wyro%C5%9Bla-Chrz%C4%99stno-Kostne-MHE-Polska-315917039340249/

Sweden

MHE Sverige

https://www.facebook.com/groups/362681743781829/

 

 

MHE FaceBook Pages

 

MHE Coalition: https://www.facebook.com/mhecoalition/

Bumpy Bone Club: https://www.facebook.com/groups/91489516242/

MHE and Me: https://www.facebook.com/groups/23153126165/

MHE Family and Friends: https://www.facebook.com/groups/4696022285

 

 

 

Managing Pain & Fatigue/Chronic Illness

 

Pediatric Specific

 

National Jewish Health, nj4kids, njhealth.org

Understanding Children and  Chronic Illness: Protecting your child's emotional health

http://www.nationaljewish.org/NJH/media/pdf/pdf-Understanding-ChildrenChronicIllness.pdf

Pediatric Psychosocial Issues:  Illness Management

http://www.nationaljewish.org/healthinfo/pediatric/psychosocial/illness-management

 

Royal Children's Hospital, Melbourne, Australia

Pain, Pain, Go Away: helping children with pain

http://www.rch.org.au/uploadedFiles/Main/Content/anaes/Pain_go_away.pdf

 

Adults

 

Partnersagainstpain.com

Having an Open and Honest Conversation with your Healthcare Professional about Pain

http://www.partnersagainstpain.com/printouts/Hands_On_Patient_Guide.pdf

 

RSD

 

 

 

Managing School

 

Elementary School

 

Middle/High School

 

College

 

 

Managing Work

 

 

Hospitals & Medical Centers

 

Shriners Hospitals for Children:

http://www.shrinershospitalsforchildren.org/en/care/orthopedics

 

 

​© 2015 by MHE Coalition.

Proudly created with Wix.com

Thank you to Nicole Wynn for designing our logos and contributing her original artwork to our website and our hand-outs.  Nicole is a talented graphic designer who just happens to be living with MHE... you can visit her website at nicolewynn.net

  • w-facebook