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Eighth International Family Conference May 28-31, 2015

Eighth International Family Conference May 28-31, 2015

Our Eighth International NBIA Disorders Association Family Conference will be held May 28-31, 2015. Site of the conference is the Embassy Suites Minneapolis North in Brooklyn Center, Minn.

The hotel is approximately 7 miles from downtown Minneapolis. Room rates are $114 for up to 2 people and $10 for each additional person. Our conference will start Thursday evening and conclude on Sunday at noon.   ...More

 
NBIA Disorders Grant

Research Call for PKAN grant applications

We are now accepting grant applications for PKAN research. Deadline for submission is September 15, 2014. Our research priorities for the 2014 NBIA-PKAN grant cycle are:

Support studies to:

  • Develop rational therapeutics for PKAN
  • Discover and validate biomarkers of disease in PKAN
  • Delineate the molecular cascades that lead to early cellular changes in PKAN
  • Advance understanding of why the globus pallidus is selectively vulnerable to defective PANK2
  • Propose novel ideas to advance the understanding or treatment of PKAN   ...More
 
Research Grants

Board awards 3 research grants in March totaling $239,680 to study NBIA

The NBIA Disorders Association board is awarding $239,680 to three research projects that received top scores from a pool of 22 grant applications. ...More

 
Survey  
NBIA Disorders Family Survey Now Available Online

September, 2015
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....More

 

 

WAM Research Support Award for 2014  
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. ...More

 
2014 Run for NBIA Disorders  
2014 Run for NBIA Disorders

April 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. ...More

 

 

Comedy Roast for NBIA Disorders  
Charity Comedy Roast of Keith Stover

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. ...More

 
NBIA Alliance Travel Grant Awards
NBIA Alliance Travel Grant Awards

The international NBIA umbrella patient organization NBIA Alliance announces the award recipients of the travel grants to participate in the 3rd Joint Symposium on Neuroacanthocytosis (NA) and Neurodegeneration with Brain Iron Accumulation (NBIA), held in Stresa, Italy, from October 30th to November 1st, 2014. ...More

 

 

NBIA Alliance
NBIA Alliance Call for Applications

The NBIA Alliance is accepting applications for travel grants for early career researchers to the Third Joint Symposium On Neurocanthocytosis and Neurodegeneration with Brain Iron Accumulation....More

 

 

ECRD 2014
European Conference on Rare Diseases & Orphan Products

NBIA Alliance members will present a poster on TIRCON and the NBIA Alliance at the European Conference on Rare Diseases & Orphan Products in Berlin. The conference is from May 8-10 and the poster will be presented on Friday, May 9....More

 

NBIA on Facebook

Retrophin

We are pleased to recognize Retrophin, a biopharmaceutical company focused on the discovery and development of drugs for the treatment of catastrophic diseases, based in New York, NY, for their ongoing support of the NBIA Disorders Association. ...More


Brittany at Hay Market Masonic Lodge No. 313, in Haymarket, VA
Brittany at
Hay Market Masonic Lodge
No. 313, in Haymarket, VA

Hay Market Masonic Lodge No. 313, in Haymarket, VA, is an avid supporter of NBIA research. ...More