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Rare Disease Day is February 28, 2017

On February 28, 2017, the tenth edition of Rare Disease Day will see thousands of people from all over the world come together to raise awareness for rare diseases. This year’s theme is “Research.” Rare Disease Day 2017 is therefore an opportunity to call upon researchers, universities, students, companies, policy makers and clinicians to do more research and to make them aware of the importance of research for the rare disease community. It is also an opportunity to recognize the crucial role that patients play in research.

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6th International Symposium on NBIA & Related Disorders

April 7-8, 2017
Skamania Lodge, Stevenson, Washington, USA

ATTENTION RESEARCHERS: Researchers studying NBIA and similar neurological disorders will be sharing the latest advances in their work at this symposium.

Meeting highlights include discovery updates on NBIA disorders, advances in therapeutics for NBIA, poster sessions and round table discussions.

Registration is now open!

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9th International NBIA Disorders Association Family Conference

June 1-4
Deerfield, IL

Our ninth family conference comes to Chicago in June!

The NBIA Disorders Association’s Ninth International Family Conference is set for June 1 to 4 in Deerfield, IL, just 30 minutes north of Chicago and its many attractions: Millennium Park, the famed Field Museum of Natural History and the exceptional Art Institute of Chicago.

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(4th Biennial) NBIA Golf Marathon 2015

Golf Marathon 2015 logo

When & Where

Friday, September 25, 2015
Lake Arthur Country Club, Butler, PA

All proceeds to benefit the NBIA Disorders Association.

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, virtual golfers and caddies will raise money to support research and support services that assist children and adults who suffer from NBIA.

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We Can for BPAN

June 15 – September 1, 2015

Please join our We Can for BPAN campaign!

Please help us raise awareness and funds for a BPAN mouse model research grant. The organization currently has  $27,760, but we need $40,000 more for this important 2 year research project which totals $67,760.

Your help is critical! The faster we do this, the faster the research can begin. So don’t wait to get started. We CAN for BPAN runs for just two months. Together, We CAN and we are counting on you!

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Nashville Guitar Drawing


It's Back! Mike Cohn's Nashville Guitar Drawing to Support the NBIA Disorders Association!

Drawing will be held at the Eighth International NBIA Disorders Association Family Conference in Minneapolis, MN - you do not need to be present to win! Over 30 music artists have signed the guitar, including major artists Hunter Hayes, Randy Houser, Parmalee, Thompson Square, Thousand Horses and more!

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Rare Disease Day 2015

Rare Disease Day

Rare Disease Day is the one-of-its-kind international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year. The day has been established as a grassroots advocacy day and we encourage everyone to participate in some way.

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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.

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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.

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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.

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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 Far Exceeds Campaign Goal

Together for Tomorrow: An NBIA Community Campaign

Sept. 1, 2013 – Feb. 28, 2014

We are grateful to everyone who helped make our 2013-2014 Together for Tomorrow NBIA Community Campaign a roaring success.

The campaign raised $243,000, far more than the $135,000 goal we had set. Support came from over 340 individuals and also included a very generous anonymous gift and a corporate donation from our friends at Retrophin, a partner in our NBIA research and a sponsor of our family conference in San Antonio.

Money from the campaign has enabled the board to fund three substantial research grants and to issue a call for a second round of grants this year.

“We are thrilled with the success of the campaign and grateful for the generosity of the NBIA community,” NBIADA Board President Patricia Wood said. “We would like to thank all the donors and volunteers who stepped up to the plate and generously supported this campaign. It’s amazing what we can accomplish if we work together.”

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