Update on the CoA-Z clinical trial

Over the past few months, the OHSU CoA-Z study team has shared the initial study results with all...

NBIA International Scientific Conference in Poland

On October 19 and 20, 2023, a BPAN workshop, an NBIA Alliance meeting, was held in Warsaw, Poland....

Videos of the NBIA Family Conference 2023 in the USA online

For the first time since the pandemic, the NBIA Disorders Association held the 12th International...

Insights into BPAN research at the family conference in the USA

BPAN families attending the NBIA Disorders Association (NBIADA) Family Conference in May in...

MDBR sets donation record and makes 2 scholarships possible

This year, the "NBIA Disorders" team and NBIA families have been involved in the Million Dollar Bike...

BPAN researcher develops stem cell model and awaits funding for planned drug screening

Dr. Paul Lockhart of the Murdoch Children's Research Institute in Melbourne, Australia, says that...

News from research

Here you will find current information on NBIA research and related research areas.

Update on the CoA-Z clinical trial

Update on the CoA-Z clinical trial

Over the past several months, the OHSU CoA-Z study team has shared the initial study results with all CoA-Z study participants and their families, as well as the broader NBIA community of families, friends, clinical providers and supporters. It follows...

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NBIA International Scientific Conference in Poland

NBIA International Scientific Conference in Poland

On October 19 and 20, 2023, a BPAN workshop, an NBIA Alliance meeting and an international NBIA scientific conference were held in Warsaw, Poland. There, researchers, physicians and patient representatives from many countries came together to discuss the...

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INAD gene therapy is one step closer

INAD gene therapy is one step closer

Work on a gene therapy for infantile neuroaxonal dystrophy, called INAD, got a big boost in October when a London-based biotech firm announced its intention to help improve the...

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PKAN study with CoA-Z completed in the USA

Oregon Health & Science University in Portland (USA) conducted the first clinical trial for PKAN patients in the USA from 2019 to 2022 with a new drug called "CoA-Z" for the treatment of PKAN. This first part of the trial has now been...

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Two MPAN project grants totaling $140,000 awarded

Two MPAN project grants totaling $140,000 awarded

Hoffnungsbaum e.V. in conjunction with three sister organizations in Europe and the US, has awarded two MPAN grants to advance research priorities in the field of mitochondrial membrane protein-associated neurodegeneration (MPAN)...

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