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Coordinated Care

by GingerD
Join us on Friday, Aug. 5 at noon EDT as patient advocate Kristi Wees discusses medical homes for Mito patients.Topics include:
Jul 25, 2016 Comments: 0
by Cristy Balcells

Join us on Friday, March 6, 2015 with Dr. Sumit Parikh, Director of the Cleveland Clinic Neurogenetics, Metabolic and Mitochondrial Disease program, and past president of the Mitochondrial Medicine Society. Learn more about the 2014-2015 publications based on collaborations and consensus surveys completed by the Mitochondrial Medicine Society. The landmark series of publications is the first to address existing standards of care and most common approaches to diagnosis, use of supplements and symptom management by leaders in mitochondrial medicine around the US.

Feb 20, 2015 Comments: 0
by Cristy Balcells

It's time to take charge of the many hours that we as patients and families spend in clinics, waiting rooms, hospitals, and healthcare provider offices. How can you get more out of every appointment? More importantly, how can you get what you need from those interactions?

Feb 21, 2013 Comments: 0
by Cristy Balcells
Do you have a child with mitochondrial disease (known or suspected)?Are you stressed?Are you tired?Do you feel like no one, including friends and even your own doctors, really understands what it's like to be the parent of a child with Mito?You can make a difference by participating in this 10 minute survey through Washington State University School of Nursing. WE NEED YOUR VOICE!!!
Jan 28, 2013 Comments: 0
by Cristy Balcells
Frustrated with the run-around from health insurance companies? Join us this month with as we discuss strategies for advocating for the diagnosis, management, and treatment of your mitochondrial disease:

- Questions to ask when you receive a health insurance denial

- How to write and get help with an appeal

Apr 27, 2012 Comments: 0
by Cristy Balcells

During a time when families with children with mitochondrial disease may face accusations of medical child abuse or Munchausen's Syndrome by proxy, it is incredibly important to advocate responsibly and communicate effectively. Join us this month with guest speaker Mannie Taimuty-Loomis, BS OD, MAHED and Executive Director of the Jonah & The Whale Foundation, Inc. to learn more and discuss:

Jan 31, 2012 Comments: 0
by Cristy Balcells

Supporting the brothers and sisters of kids with special needs

Sep 28, 2010 Comments: 0
by Cristy Balcells
For someone who lives with mitochondrial disease, understanding the "big picture" is important.

LISTEN TO THE RECORDING OF THIS MEETING HERE!

Aug 31, 2010 Comments: 2
by Cristy Balcells
Becoming a great advocate: Advice for parents & patients with complex needs

Join us this month with Mark Korson MD and Maggie Orr RN MSN MEd from Tufts Floating Hospital for Children in Boston, MA to discuss the do's and don'ts of being an advocate.Listen to this teleconference recording here

Mar 30, 2010 Comments: 0
by Cristy Balcells
Palliative care & hospice: Quality of Life Dr. Pat O'Malley from Massachusetts General Hospital talks about long-term care and quality of life support for adults and children with mitochondrial disease.

Mar 26, 2009 Comments: 2

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