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Nbia Disorders Association

Rating: 5 stars   1 review 583

Address:

2082 Monaco Court El Cajon CA 92019 USA

Mission:

In our drive to find a cure for nbia, we provide support to families, educate the public and accelerate research with collaborators from around the world.

Programs:

Research grantsthe association raises money to fund grants for scientific and medical research to assist in finding a cure for nbia. In this year, $146,853 was raised for research; the association has awarded three grants totaling $202,725.

family conferencefamily conferences are held every two to three years. They provide a meeting for nbia-affected families from around the world to network, receive information about research and treatments, share information, and support eachother. There is also the opportunity for families to meet individually with nbia medical experts and receive advice on treatment options. The eighth international family conference was held in minneapolis in may 2015. A record number of participants, 175 people from seven countries attended.

education & supportthis program encompasses many areas of work by the organization. All responses to general emails from nbia families, from the public and others are handled by this program, in addition to all dissemination activities. The association maintains a web presence at www. Nbiadisorders. Org which provides a database of current and accurate information on nbia. The association also moderates a group forum, has a networking program and a social media director, has a facebook group & facebook cause page, is on twitter and linked-in, and has multiple videos posted on an nbia you-tube channel. These all provide a forum for affected individuals, their families, caregivers and others affected by someone living with nbia to receive emotional support and to share information. These functions also help promote awareness and educate the public and the medical community about nbia disorders.

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More Info

(619) 588-2315
www.nbiadisorders.org

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Reviews for Nbia Disorders Association

Rating: 5 stars  

1 person found this review helpful

My daughter was diagnosed with this devastating disorder 5 years ago. She is now completely dependent in all aspects of daily living.

NBIA is a rare genetic disorder that slowly and sometimes not so slowly takes control of your body. There is no treatment or cure.

NBIA Disorders Assoc. is helping raise awareness, connecting families and researchers until a cure can be found.

For more information about NBIA log on to www.NBIAdisorders.org and for more information about my daughters journey, log on to www.queenbeeworld.com

I've personally experienced the results of this organization in...

NBIA Disorders Assoc. has been the best resource for our family. After receiving my daughters diagnosis in 2006, we did not know what to do. The Assoc. helped us get in touch with other families to better understand how our daughters life was going to be affected and prepare us for a very difficult journey.

If I had to make changes to this organization, I would...

It is a great organization that is in critical need of funding so that they can continue to raise awareness, fund research and help families.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2011

 
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