• ORGANIZATION PROFILE
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  • NBIA Disorders Association NBIA Disorders Association

Causes

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(32.76049,-116.91047)
 

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Mission Statement

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. Neurodegeneration with Brain Iron Accumulation (NBIA) disorders are a collection of 10 identified conditions all sharing the characteristic of excessive iron in the brain. The disorders have profound impact on those affected, and their families. They are ultra-rare disorders, affecting 1-3 people per million.

Description

Founded in 1996, the organization conducts a variety of services in support of families while furthering research by granting funds, primarily raised by families affected by the disorders.

Goals:

  • To provide a supportive environment in which people affected by NBIA and their loved ones can share needs, concerns and experiences.
  • To share up-to-date information about treatment and care options with all members of the NBIA community.
  • To increase recognition of NBIA among clinicians and other healthcare professionals and promote early diagnosis and access to optimal care.
  • To participate effectively in the international NBIA community and foster collaboration with our affiliated NBIA lay advocacy groups in other countries.
  • To build an expanding base of committed contributors who will help provide funds to achieve our vision.
  • To encourage, guide and fund research to improve understanding, diagnosis and treatment, and ultimately, find a cure for NBIA disorders.

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