Radfahren für BPAN-Forschung – Million Dollar Bike Ride 2023

Auch in diesem Jahr sammelt der Million Dollar Bike Ride (MDBR) der University of Pennsylvania in...

International NBIA Symposium held in Switzerland in October 2022

2020 fand das letzte NBIA-Wissenschaftlertreffen pandemiebedingt nur online statt. Im Oktober 2022...

Two MPAN project grants totaling $140,000 awarded.

Hoffnungsbaum e.V. has, in conjunction with three sister organizations in Europe and the USA, developed two...

Mulled wine stand in aid of Hoffnungsbaum and Team Bananenflanke

The Sandbox Friends, Melanie Schratzenstaller, Michael Bogner, Stephan Thalhammer, Stefan Huber,...

8th International Symposium on NBIA in Switzerland

NBIA scientists will meet to share their research Oct. 13-15 in...

Research project leads to a stem cell model of FAHN

A team of German scientists who received a 2020 grant from the NBIA Disorders Association...

Pilot Grant of $69,775 announced for BPAN research.

The Million Dollar Bike Ride 2022 (Learn more about this fundraiser) raised $69,775 in...

NBIA Family Conference 2022 postponed!

Hoffnungsbaum e.V. wanted in September 2022 in the youth hostel of Heilbronn the 9....

July 6, 2022, Online Lecture: Myofasciotomy - a minimally invasive treatment for shortened muscles.

NBIA disorders are often associated with limited range of motion, changing muscle tension and...

News from the research

Here you will find current info from NBIA research and related research areas.

Care guidelines for PLAN are now in the works

Care guidelines for PLAN are now in the works

Übersetzung eines englischen Artikels von Patricia Wood Dank der Unterstützung von vier Organisationen, die das Projekt finanzieren, sind nun Konsensleitlinien für die Behandlung und Versorgung bei einer Form von NBIA, die als PLAN oder PLA2G6-assoziierte...

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INAD gene therapy moves one step closer

INAD gene therapy moves one step closer

Gekürzte Übersetzung eines englischen Artikels von Patricia Wood Die Arbeit an einer Gentherapie für Infantile Neuroaxonale Dystrophie, genannt INAD, bekam im Oktober einen großen Anschub, als eine Londoner Biotech-Firma ihre Absicht bekundete, dabei zu helfen, die...

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PKAN study with CoA-Z completed in the USA

Die Oregon Health & Science University in Portland (USA) hat von 2019 bis 2022 mit einem neuen Präparat namens „CoA-Z“ zur Behandlung von PKAN eine erste klinische Studie für PKAN-Patienten in den USA durchgeführt. Dieser erste Studienteil wurde inzwischen...

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Two MPAN project grants totaling $140,000 awarded.

Two MPAN project grants totaling $140,000 awarded.

Hoffnungsbaum e.V. In partnership with three sister organizations in Europe and the United States, has awarded two MPAN grants to advance research priorities in mitochondrial membrane protein-associated neurodegeneration (MPAN) ...

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8th International Symposium on NBIA in Switzerland

8th International Symposium on NBIA in Switzerland

NBIA scientists will meet to share their research Oct. 13-15 in Lausanne, Switzerland, as part of the 8th International NBIA Symposium. More than 20 scientists and physicians from around the world will present the results of their NBIA projects,...

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Pilot Grant of $69,775 announced for BPAN research.

Pilot Grant of $69,775 announced for BPAN research.

The Million Dollar Bike Ride 2022 (Learn more about this fundraiser) raised $69,775, which has now been put out to bid by the Orphan Disease Center for a research project on BPAN. Researchers can apply for a pilot at the following link....

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