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- The story of a newly diagnosed NBIA family
- Jonathan Stretter’s Story of Move from California to Massachusetts
- Sisters' Special Connection Penned in New Book
- Brother, sister cope with NBIA as active, happy young adults
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- At long last, my family has a big piece of the puzzle
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- Arzate, Aiden
- Augustyniak, Kamil
- Barbiero, Alyssa
- Barbiero, Sabrina
- Belcher, Bruce J.
- Belcher, Rebekah (Becky) L.
- Bennett, Rachel
- Brolin, Eric Robert
- Byler, Andy
- Campbell, Christina Lee
- Craft, Logan
- Crosby, Dietrich
- Davis, Christy
- Deters, Rebecca
- Draheim, Emilia
- Frederick, Madison Bailee
- Fry, Brent Michael
- Fuller, Stevi Rae
- Galt, Kathleen
- Gray, Austin
- Haugen, Sharon Denise
- Janicki, Bartlomiej
- Lockard, Aubrey Danielle
- Mayfield, Kelsey
- Meade, Cameron
- Mercer, Hannah Margaret
- Miller, Amy, Mandy & Susie
- Moore, Melissa Ann
- Ólafsdóttir, Eva Dögg
- Olsen, Sonja
- Ose, Jared
- Patterson, Benjamin Scott
- Pfister, Joyce Marie
- Phillips, Jake
- Robberecht, Stijn
- Smyth, Julie
- Socha, Maciej
- Solis, Chloe Rae
- Sootheran, Alexis LeAnne
- Stromsta, Kenneth Peter
- Tague, Kristopher M. "Pete"
- van Schijndel, Wendy
- West, Zachary Thomas
- Wylie, Jacob Dalton
- Overview
- Research
- Research Overview
- TIRCON
- Grants Awarded
- Contracts Awarded
- Research Meetings
- 2020 7th International Symposium on NBIA & Related Disorders
- 2017 6th International Symposium on NBIA & Related Disorders
- 2014 - The Third Joint Symposium On Neuroacanthocytosis and Neurodegeneration with Brain Iron Accumulation
- 2012 “The Second Joint International Symposium on Neuroacanthocytosis and Neurodegeneration with Brain Iron Accumulation.”
- 2011 “NBIA: Neurodegenerazione con Accumulo Intracerebrale di Ferro” Symposium
- 2010 “The First Joint International Symposium on Neuroacanthocytosis and Neurodegeneration with Brain Iron Accumulation”
- 2009 "NBIA Genes in Health and Disease"
- 2005 “Second Scientific Workshop on Neurodegeneration with Brain Iron Accumulation”
- 2000 “First Scientific Workshop on Hallervorden-Spatz Syndrome”
- Clinical Trials
- Patient Registry
- Grants Program / Funding Opportunities
- Scientific Publications
- Connect with Us: Researchers, Clinicians, Professionals
- Medical Information
- Support Our Work
- News
- News
- NBIA News Archive
- Organization wins award from DonorPro
- Request for Board & Development Members
- New research policy taking effect
- NBIA Disorders Association board awards nearly $160,000 in grants
- Meet Drew
- 2015 Research Grant Cycle Open for Applications
- OHSU Awarded Research Grant for 2014 PKAN Grant Round
- NBIAready Project Launches Website
- Eighth International Family Conference May 28-31, 2015
- Board awards 3 research grants in March totaling $239,680 to study NBIA
- NBIA research advances with grant awards
- Focus on Issues Radio
- SCOPE Summit
- New Research Grant cycle open for applications
- 2013 Family Conference
- New Google Group Forum for NBIAdisorders
- Team NBIA Disorders wins BPAN funding as deadline for letter of interest looms
- NBIA Disorders Association celebrates 25 years
- CoA Therapeutics launches phase 1 PKAN drug study
- Study brings new insights on BPAN defective gene
- BPAN families have a new way to share data, accelerate research
- Fundraising from May to August brings in more than $9,000
- Register now for our first-ever virtual family conference
- Fundraising race is on for Million Dollar Bike Ride
- BPAN research moves ahead with grant from 2020 bike ride
- NBIA Poland funds study to better understand MPAN’s causes
- Scientific & Medical Advisory Board welcomes two new members
- Fundraisers so far this year bring in $12,400
- BPAN families gather virtually to offer each other support
- Hoffnungsbaum e.V funds MPAN project at Helmholtz Zentrum Center in Munich
- Study sparks new approach to BPAN understanding and treatment
- BPAN research provides insights into how iron accumulates in brain
- BPAN study examines how mutated gene affects individuals
- Research identifies several possible drug candidates for treating BPAN
- Team NBIA Disorders reaches $30,000 goal for MDBR
- 2019 Million Dollar Bike Ride supporting BPAN stem cell project
- NBIA Disorders Association awards $45,000 for FAHN research in March
- OHSU reports on plans to launch CoA-Z trial with help from grant
- Clinical trial of Retrophin drug fails; Shows no benefit for PKAN patients
- Deferiprone trial results produce positive findings for some with PKAN
- Two new grants awarded to BPAN researchers in January
- Two PKAN grants awarded this year in collaboration with sister groups
- Three clinical trials are underway; two others are being planned
- Collaborations will lead to 5 NBIA grant awards in early 2019
- NBIA organization awards two grants for BPAN, including the first for an early-career researcher
- Deadline looming to seek BPAN research grants
- Scientists report on progress of current NBIA research projects
- Nearly $150,000 in grants awarded for BPAN research
- Hayflick, Hogarth and Sibon team moving ahead on one of two drugs for PKAN
- Board awards its first grants for FAHN research
- First patients in Retrophin trial to receive drug targeting PKAN
- Hayflick team announces work on 2 promising compounds for PKAN
- Million Dollar Bike Ride nets $101,014 for BPAN research
- Retrophin recruiting for PKAN drug study
- Retrophin announces delay in starting RE-024 trial
- Next round of NBIA research grants to focus on BPAN and FAHN
- Identifying NBIA research priorities key topic at meeting of families, researchers and board
- Two more researchers join association’s Scientific & Medical Advisory Board
- Researchers in Portland host first-ever meeting with BPAN families
- NBIA News Archive
- NBIA Alliance News
- NBIA Alliance News Archive
- First family and professional conference for NBIA disorders to be held in Barcelona, Spain, November 13-14, 2015
- Italian NBIA organization holding first family conference October 10-11, 2015
- Spanish Researchers Receive Funding to Study NBIA Disorders
- Canadian Group Joins NBIA Alliance
- NBIA Alliance Travel Grant Awards
- NBIA Alliance Call for Applications
- European Conference on Rare Diseases & Orphan Products
- Hoffnungsbaum e.V. 7th NBIA Family Conference
- ENACH Asociación raising NBIA awareness in Spain
- Newest Member of Alliance raises funds for NBIA research
- NBIA Alliance News Archive
- NBIA Newsletters
- NBIA News Archive
- Organization wins award from DonorPro
- Request for Board & Development Members
- New research policy taking effect
- NBIA Disorders Association board awards nearly $160,000 in grants
- Meet Drew
- 2015 Research Grant Cycle Open for Applications
- OHSU Awarded Research Grant for 2014 PKAN Grant Round
- NBIAready Project Launches Website
- Eighth International Family Conference May 28-31, 2015
- Board awards 3 research grants in March totaling $239,680 to study NBIA
- NBIA research advances with grant awards
- Focus on Issues Radio
- SCOPE Summit
- New Research Grant cycle open for applications
- 2013 Family Conference
- New Google Group Forum for NBIAdisorders
- Team NBIA Disorders wins BPAN funding as deadline for letter of interest looms
- NBIA Disorders Association celebrates 25 years
- CoA Therapeutics launches phase 1 PKAN drug study
- Study brings new insights on BPAN defective gene
- BPAN families have a new way to share data, accelerate research
- Fundraising from May to August brings in more than $9,000
- Register now for our first-ever virtual family conference
- Fundraising race is on for Million Dollar Bike Ride
- BPAN research moves ahead with grant from 2020 bike ride
- NBIA Poland funds study to better understand MPAN’s causes
- Scientific & Medical Advisory Board welcomes two new members
- Fundraisers so far this year bring in $12,400
- BPAN families gather virtually to offer each other support
- Hoffnungsbaum e.V funds MPAN project at Helmholtz Zentrum Center in Munich
- Study sparks new approach to BPAN understanding and treatment
- BPAN research provides insights into how iron accumulates in brain
- BPAN study examines how mutated gene affects individuals
- Research identifies several possible drug candidates for treating BPAN
- Team NBIA Disorders reaches $30,000 goal for MDBR
- 2019 Million Dollar Bike Ride supporting BPAN stem cell project
- NBIA Disorders Association awards $45,000 for FAHN research in March
- OHSU reports on plans to launch CoA-Z trial with help from grant
- Clinical trial of Retrophin drug fails; Shows no benefit for PKAN patients
- Deferiprone trial results produce positive findings for some with PKAN
- Two new grants awarded to BPAN researchers in January
- Two PKAN grants awarded this year in collaboration with sister groups
- Three clinical trials are underway; two others are being planned
- Collaborations will lead to 5 NBIA grant awards in early 2019
- NBIA organization awards two grants for BPAN, including the first for an early-career researcher
- Deadline looming to seek BPAN research grants
- Scientists report on progress of current NBIA research projects
- Nearly $150,000 in grants awarded for BPAN research
- Hayflick, Hogarth and Sibon team moving ahead on one of two drugs for PKAN
- Board awards its first grants for FAHN research
- First patients in Retrophin trial to receive drug targeting PKAN
- Hayflick team announces work on 2 promising compounds for PKAN
- Million Dollar Bike Ride nets $101,014 for BPAN research
- Retrophin recruiting for PKAN drug study
- Retrophin announces delay in starting RE-024 trial
- Next round of NBIA research grants to focus on BPAN and FAHN
- Identifying NBIA research priorities key topic at meeting of families, researchers and board
- Two more researchers join association’s Scientific & Medical Advisory Board
- Researchers in Portland host first-ever meeting with BPAN families
- News
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