Hoffnungsbaum e.V.

Association for the promotion of research and treatment of NBIA diseases

We want to make NBIA diseases curable.

NBIA diseases are like Parkinson's and dementia in childhood.

Giving hope - promoting research!

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Hope - Help - Healing...

We support those affected and their families.

Hoffnungsbaum e.V. - we want to make NBIA diseases curable.

In simple terms, NBIA diseases can be thought of as a mixture of Parkinson's disease and childhood dementia. In affected children, this manifests itself in progressive movement and developmental disorders. They gradually lose their motor skills and suffer severe, painful muscle spasms (dystonia). Depending on the NBIA disorder, dementia, severe epilepsy and various other symptoms may also occur. More info

NBIA diseases usually begin in childhood and adolescence, have hardly been researched and are still incurable. Those affected often die young. Hoffnungsbaum e. V. is committed to international research funding in order to give NBIA sufferers and their families hope for better treatment and a cure. We need your support - donate now!

The association Hoffnungsbaum e.V.

Here you will find all the important information about the association and membership.

What is NBIA?

Here you will find information on the individual NBIA diseases.

Help for those affected

Here those affected or their relatives can find important information and support.

BPAN research project in Cologne - inspired by reports from families

Five NBIA patient organizations from Germany, Italy, the Netherlands, Poland and the USA...

PKAN online meeting on 25.09.2024 - register now!

Dear families, the exchange between those affected or their families can be incredibly valuable.

One gift donation becomes two

For some time now, our website has offered the option of using the donation form to...

NBIA gene therapy updates

Historic donation of 1.2 million dollars provides fuel for PKAN gene therapy A...

Dr. Ivano Di Meo receives $100,000 grant for INAD research

The NBIA Disorders Association is pleased to announce the results of the call for applications for a scholarship in...

Global collaboration leads to progress in MPAN research

In November 2022, Hoffnungsbaum e.V. , together with its sister organizations NBIA Disorders...

CoA Therapeutics discontinues clinical trial for PKAN

It is with a heavy heart that we inform the community that CoA Therapeutics has decided to discontinue...

Two BPAN research projects funded by MDBR 2023 with $60,000 each

The 10th annual Million Dollar Bike Ride (MDBR), organized by the Orphan Disease Center at the University of...

Advancing PKAN gene therapy: a collaborative initiative

Research into a gene therapy for pantothenate kinase-associated neurodegeneration (PKAN)...

NBIAcure prepares application for FDA approval for CoA-Z

NBIAcure, a research team led by Dr. Susan Hayflick and Dr. Penny Hogarth, which...

Research

Here you will find information on international and national research projects.

Partner

Here you will find our partner organizations, umbrella associations and our global network.

Current

Here you will find current articles on various topics and our newsletter.