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Jun. 22, 2015

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Member Spotlight: UMDF

Posted by Christina Jensen

 

The UMDF Mission is to promote research and education for the diagnosis, treatment, and cure of mitochondrial disorders and to provide support to affected individuals and families.  To learn more about UMDF, please go to: www.umdf.org

1.)   What does it mean to you personally to be a patient organization serving the rare community?

  1. Fulfilling a necessary need to a group that has few resources
  2. It means we have to keep a bi-directional lines of communication so we can measure our impact and needs that are not being met

2.)   What do you find your patient community values most from your organization?

  1. Educational resources – web site and newsletter
  2. Support and empowerment
  3. Support of necessary research
  4. Professional involvement with Congress, NIH, academic institutions, industry and global collaboration

3.)   What are some of the challenges your organization has faced?

  1. Congress, NIH, academic institutions, industry and global collaboration
  2. Social media
  3. Funding
  4. Education
  5. Limited audience to draw from

4.)   Whats been your most successful awareness campaign and/or fundraising event?

  1. Energy for Life Walks – we do 28 across the country

 

The United Mitochondrial Disease Foundation

Charles A. Mohan, Jr., CEO/Executive Director

 

8085 Saltsburg Road – Suite 201

Pittsburgh, PA   15239

 

Office: 412.793.8077 ext. 111

Mobile: 412.952.0898

Fax: 412-793-6477

Office e-mail: chuckm@umdf.org

 

NORD is excited to be putting the spotlight on UMDF this week! Stay tuned for posts about UMDF on NORD social media throughout the week. If you would like your NORD Member Organization to be in the spotlight for the week, email your NORD Membership Manager for more information. 

 

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