English French German Italian Spanish


November, 2014

If you are reading this article on our website, join the crowd.

The NBIA Family Survey results are in, and they show that nearly 90 percent of you agree or strongly agree that the information in our newsletters and on our website is helpful.

The survey results already are providing the NBIA Disorders Association with important information on how to best serve our NBIA individuals and families.  We received responses from 78 families and individuals from Sept. 1 to Oct. 10.

The survey also captured information about each family, such as where they are from, which loved one has NBIA, what form of the disease they have and what kinds of activities they participate in outside of the NBIA Disorders Association.

We also learned more about what the families want and how we can better provide support. Survey respondents made it clear they gain a great deal from meeting other families. For example, 57 percent said the biennial International Family Conference is one of the best resources the organization offers, and 64 percent said they’d likely attended smaller, regional gatherings if they were held in their area.

Asked about various ways the organization communicates with them, 63 percent said they would prefer to receive the newsletter via email. Sixty-one  percent said they would have liked a welcome packet of information from the organization upon diagnosis. 

We also received a number of great ideas on how to strengthen our fundraising.

Thanks to all who took part. Your voices have been heard, and we will be incorporating some of your ideas as we move the organization forward.


Text Size

Donate Now

Sign-up for our Newsletter