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2014 Run for NBIA Disorders  
2014 Run for NBIA Disorders

April 26, 2014
Miami University Genetics Club is holding its first 5K fundraiser for NBIA on the university campus in Oxford, Ohio on April 26, 2014 at 11 am. There will be a DJ, food for racers, prizes for the top 3 male and female participants, and a raffle for all participants with various prizes. ...More

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”.

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. ...More

Together for Tomorrow  
Together for Tomorrow: An NBIA Community Campaign

September 1, 2013 - February 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. ...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

Hoffnungsbaum e.V. 7th NBIA Family Conference
Hoffnungsbaum e.V. 7th NBIA Family Conference

NBIA Alliance partner Hoffnungsbaum e.V. will hold their family conference in Hohenroda, Germany, May 1-4, 2014. This conference will bring together NBIA families, clinicians and researchers. ...More

ENACH Asociación
ENACH Asociación raising NBIA awareness in Spain

Our sister group in Spain received their non-profit status in April, 2013 and has been working hard to promote NBIA awareness in their country. In May they signed an agreement of cooperation with The Centre for Biomedical Network Research on Rare Diseases (CIBERER), which is one of nine public consortiums set up to coordinate and foster research into rare diseases in Spain....More

Ijzersterk NBIA
Newest Member of Alliance raises funds for NBIA research

Ijzersterk NBIA joined the NBIA Alliance in October, 2012 and has been busy promoting NBIA awareness in the Netherlands. Friends and families have held several fundraisers, with the latest held on May 24-25 and raising $35,105.64 for our Research Fund. ...More

Patricia Wood

Focus on Issues Radio

President Patricia Wood was the guest speaker on a “Focus on Issues” segment at KECR 910 AM radio station in El Cajon, CA in December. ...Listen

SCOPE Summit

SCOPE Summit

President Patricia Wood will participate in a panel discussion on "Partnership with Patient Communities to Get from Data to Clinic” at the Cambridge Healthtech Institute's SCOPE Summit in Miami. ...More


New Research Grant Cycle Open for Applications

Researchers interested in applying for a grant from NBIA Disorders Assn. have until 10/31/13 to submit a letter of intent. Grants will be for one year and up to $45,000 with funding to begin April, 2014.  ...More

Clinical Trial

Two Clinical Trials Underway for PKAN

Listed in this news article are two clinical trials that may be of interest to you. Click the button below for more information about them. ...More


Latest Blogs
TIRCON meeting in Warsaw
TIRCON WarsawInformation worth sharing about our TIRCON activities. ...More
BrainGate research provides hope for the future
KimbiBy the time my daughter, Kimbi, was 4, she had already lost the ability to walk, talk, swallow and even lift her head. ...More

Quest Diagnostics

Quest Diagnostics based in Madison, N.J., and its many employees have been avid NBIA supporters for the past seven years. The employees have worked tirelessly to help spread awareness of NBIA and raise money for research, causes close to the heart of their colleague, Rich Leap of Haymarket, VA. ...More

Ody Sibon
Dr. Ody Sibon

In the Netherlands, when a researcher becomes a full professor, a special ceremony is held where he or she gives a lecture and is then feted at a big party with dinner and drinks. ...More