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NBIA Disorders Family Survey Now Available Online


The NBIA Disorders Association is always looking to improve and grow so that it may best serve the needs of its families and supporters. We are asking all NBIA Disorders families to complete a 10 minute survey by October 6, 2014 In order to help us better understand you, your family, and your goals for our organization.


WAM Research Support Award for 2014


May 27, 2014

The Women in Academic Medicine Committee at Oregon Health & Science University is very pleased to announce that Allison Gregory is this year’s winner of the Research Support Award.


2014 Run for NBIA Disorders

2014 Run for NBIA DisordersApril 26, 2014

Miami University Genetics Club held its first 5K fundraiser for NBIA on the university campus in Oxford, Ohio on April 26, 2014 at 11 am. There was a DJ, food for racers, prizes for the top 3 male and female participants, and a raffle for all participants with various prizes. Registration was  $10 pre-registration and $15 day of the race. The Genetics Club was originally formed with the sole intention of raising money for NBIA disorders, and this remains the primary focus of the group. This event raised $500 for our organization.


Charity Comedy Roast of Keith Stover

Charity Roast for NBIA

March 1, 2014

Drusky Entertainment coordinated a Charity Comedy Roast of Keith Stover in March for NBIA. It was held at the Hard Rock Café in Pittsburgh, PA.

A weight loss challenge was also held and the winner, Rita Leap, was announced at the roast.

A total of $4,256 was raised for our organization. Thanks to all who participated.

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Rare Disease Day 2014

Rare Disease Day 2014

February 28, 2014

Rare Disease Day highlights the global health challenges posed by rare disorders. The theme for 2014 is “Join Together For Better Care”

Rare Disease Day was established in 2008 by the European Rare Disease Organization (EURORDIS). The following year the group asked the National Organization for Rare Disorders (NORD) to be a partner in promoting the event and to sponsor Rare Disease Day in the United States. Every year more countries join in celebrating Rare Disease Day and last year over 70 countries participated.

In the U.S., any disease affecting fewer than 200,000 people is considered rare. An estimated 7,000 rare diseases affect nearly 30 million Americans. In other words, almost one in 10 Americans suffers from rare diseases.


NBIA Golf Marathon 2013

NBIA Golf Marathon 2013

Lake Arthur Country Club, Butler PA

Friday, September 27

Play 100 holes of golf in 1 day! The NBIA Golf Marathon is a day of fun at the Lake Arthur Country Club in Butler, PA. This year, golfers and caddies will raise pledge money to support research and support services that assist children and adults who suffer from NBIA.

Each golfer sponsors themselves for a minimum of a $125 donation and has a goal of $1,250 in pledges. New this year is the opportunity to register as a caddy and a virtual golfer. A caddy must sponsor themselves for a minimum of $75 with a goal of $500 in pledges. A virtual golfer sponsors themselves for $100 donation and has a goal of $1000. Of course you can still play if you do not raise your goal, but we do ask you to try to get as many pledges as possible. Last year we averaged more than $1,000 per golfer. Also new this year is the ability to create your own personal fundraising page, enabling you to set your fundraising goal, post messages, and collect donations online via credit card.

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Together for Tomorrow

Together for Tomorrow: An NBIA Community Campaign

Sept. 1, 2013 – Feb. 28, 2014

Every year caring volunteers just like you donate their time to the NBIA Disorders Association to help raise funds to support research and support services that assist children and adults who suffer from NBIA.

Now you can do your part to help people with NBIA by participating in our new internet fundraising and awareness campaign. Together for Tomorrow: An NBIA Community Campaign is an opportunity for the NBIA community to work together to raise awareness and funds that will support the NBIA community.

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