Cycling for BPAN research - Million Dollar Bike Ride 2023

Once again this year, the Million Dollar Bike Ride (MDBR) at the University of Pennsylvania in...

International NBIA Symposium took place in Switzerland in October 2022

In 2020, the last NBIA scientists' meeting was only held online due to the pandemic. In October 2022...

Two MPAN project grants totaling $140,000 awarded

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

Mulled wine stand for the benefit 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 meet to share their research from October 13-15 in...

Research project leads to a stem cell model of FAHN

A German team of scientists who received an award from the NBIA Disorders Association in...

Pilot Grant in the amount of $69,775 announced for BPAN research

As part of the Million Dollar Bike Ride 2022 (more information on this fundraising campaign), $69,775...

NBIA Family Conference 2022 postponed!

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

July 6, 2022, online lecture: Myofasciotomy - a minimally invasive treatment for shortened muscles

NBIA disorders are often associated with restricted movement, changing muscle tension and...

Latest posts

Here you will see the most recent posts from all categories.

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

From 2019 to 2022, Oregon Health & Science University in Portland (USA) conducted a first clinical trial for PKAN patients in the USA with a new drug called "CoA-Z" for the treatment of PKAN. This first part of the study 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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8th International Symposium on NBIA in Switzerland

8th International Symposium on NBIA in Switzerland

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

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Research project leads to a stem cell model of FAHN

Research project leads to a stem cell model of FAHN

A team of German scientists who received a $45,000 research grant from the NBIA Disorders Association in 2020 have successfully completed a stem cell model of FAHN to give researchers a better understanding of the disease and...

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NBIA Family Conference 2022 postponed!

Hoffnungsbaum e.V. wanted to organize the 9th NBIA Family Conference in Germany in September 2022 at the youth hostel in Heilbronn. We were very much looking forward to finally having a face-to-face meeting of NBIA families again after two years of the pandemic.

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CoA Therapeutics press release on Phase 1 study for PKAN

CoA Therapeutics press release on Phase 1 study for PKAN

We hereby issue the following press release from CoA Therapeutics: "CoA Therapeutics and BridgeBio Pharma present data from the Phase 1 study in healthy individuals to support the development of BBP-671 for PKAN and organic acidemia On May 26, 26th...

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Survey Helps Prepare Clinical Trial for PKAN Patients

Survey Helps Prepare Clinical Trial for PKAN Patients

The Californian company CoA Therapeutics is currently preparing a clinical trial of a new drug for PKAN patients. In order to make this study as patient-centered as possible, CoA Therapeutics developed a survey last year in which the...

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Call for proposals on MPAN research open by May 2, 2022

Call for proposals on MPAN research open by May 2, 2022

Associazione Italiana Sindromi Neurodegenerative da Accumulo di Ferro (AISNAF, Italy), Hoffnungsbaum e.V. (HoBa, Germany), NBIA Disorders Association (NBIADA, USA), and Stichting Ijzersterk (The Netherlands) are soliciting the submission of research projects by...

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Generational change in the Management Board of Hoffnungsbaum

Generational change in the Management Board of Hoffnungsbaum

On 21.11.2021, the annual general meeting of Hoffnungsbaum e.V. (HoBa) – with groundbreaking decisions for the future of our NBIA patient organization through the completion of the generational change in the association's management and the reorganization...

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PKAN drug screening at Yale University

PKAN drug screening at Yale University

Since July 2021, a new one-year PKAN research project has been underway at Yale University, New Haven (USA) under the direction of Professor Choukri Ben Mamoun. The project, entitled: "A high-throughput screen for PKAN-revising agents", is being carried out as part of...

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Cycling for BPAN - Million Dollar Bike Ride 2021

Cycling for BPAN - Million Dollar Bike Ride 2021

It's that time again: The Million Dollar Bike Ride (MDBR) of the University of Pennsylvania in Philadelphia will take place for the 8th time until June 12, 2021. Due to the pandemic, this charity bike race will once again not only take place in the USA, but virtually all over the...

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Hoffnungsbaum Info Letter 2020

Hoffnungsbaum Info Letter 2020

Also in 2020 we have put together an information letter for you. It contains information about the association's activities in 2020 and an outlook for next year. If you want to be kept up to date, subscribe to our online newsletter.

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PKAN family launches another fundraising campaign

PKAN family launches another fundraising campaign

As at the beginning of the year, the Bianchi family is once again actively collecting donations for PKAN research during Advent, as their 3-year-old son Giulio suffers from this form of NBIA. In their home town of Kronau, parents Melanie and Tony have set up a stand with...

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Results of the Hoffnungsbaum survey 2020

In the period August – September 2020, Hoffnungsbaum e.V. conducts a wide-ranging opinion poll among all members of the association as well as NBIA families in Germany, Austria and Switzerland with whom we are in contact. The aim of the survey was to explore...

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NBIA Symposium 2020 takes place online

 The 7. International Symposium on NBIA and Related Diseases will now be held virtually from September 30 to October 3, 2020. Save the date for our virtual symposium! • Update on new findings in NBIA diseases...

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7th International NBIA Symposium in Lausanne postponed!

7th International NBIA Symposium in Lausanne postponed!

Postponed to autumn 2021 due to the Corona situationThe 7th International NBIA Symposium will unfortunately not take place from 1 – 3 October 2020 in Lausanne, Switzerland and will be postponed to autumn 2021. For three days, scientists and physicians from...

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Hoffnungsbaum Information letter at the end of 2019

Hoffnungsbaum Information letter at the end of 2019

Hoffnungsbaum e.V. sent out a newsletter as a print edition for the last time this winter, which is available for download here: Hoffnungsbaum-Infoletter-Winter-2019 In the future, we will mainly be able to use our new website or our website.

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New research project on BPAN in Tübingen

New research project on BPAN in Tübingen

Tübingen research group led by Professor Tassula Proikas-Cezanne and Hoffnungsbaum e.V. join forces to research BPAN Deciphering the causes of rare, neurodegenerative diseases is a lengthy process that involves a great deal of effort for those...

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Autophagy Congress in Tübingen with panel discussion

Autophagy Congress in Tübingen with panel discussion

On September 24, 2019, as the father of a daughter with BPAN and in my role as Second Chairman of Hoffnungsbaum e.V.I took part in a public panel discussion on the topic of "Autophagy and its importance for health and neurodegeneration". You...

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First results from FORT study for PKAN

The pharmaceutical company Retrophin had developed the drug fosmetpantotenate for the treatment of PKAN. This was evaluated for safety and efficacy in a placebo-controlled and multicenter double-blind clinical trial (FORT study).

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PKAN: Results of Clinical Trial with Deferiprone

PKAN: Results of Clinical Trial with Deferiprone

From 2011 to 2015, the international NBIA research project TIRCON (Treat Iron-Related Childhood-Onset Neurodegeneration) received financial support from the European Union. A key TIRCON sub-project was a clinical trial to investigate the safety of...

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MPAN can also be inherited in an autosomal dominant manner

The NBIA research group of Dr. Susan Hayflick at Oregon Health & Science University in Portland (OR, USA) has discovered that mitochondrial membrane protein-associated neurodegeneration (MPAN) can also be inherited in an autosomal dominant manner. MPAN belongs...

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Financing of a second PKAN project after the 2018 tender

Financing of a second PKAN project after the 2018 tender

Dario Finazzi and his team at the University of Brescia are supported for their research on PKAN zebrafish by AISNAF, Hoffnungsbaum e.V. and NBIA Disorders Association for their research on PKAN zebrafish. As part of the 2018 joint international funding initiative, the project led by Lauriel Earley...

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Half marathon turned into a BPAN charity run

Half marathon turned into a BPAN charity run

Participants of the MPIA at this year's SAS Half Marathon in Heidelberg, Image: MPIA/J. Henshaw On April 7, 2019, 14 colleagues from our board member Markus Nielbock from the Max Planck Institute for Astronomy (MPIA) made a...

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Rhein-Neckar-Zeitung reports on Milly's mission

Rhein-Neckar-Zeitung reports on Milly's mission

February 28 is International Rare Disease Day. Numerous events have been taking place around the globe to mark the occasion for days and continue to do so today. There is also a great deal of interest from the media. The Day of Rare Diseases is intended to...

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News from Maya and the MPAN fundraiser

News from Maya and the MPAN fundraiser

In December, we presented the Matthiesen family's fundraising campaign for MPAN research. Maya herself actively supports this crowdfunding campaign, which was launched by her parents shortly after her diagnosis. Together with her big brother, she has...

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Rare Disease Day in Heidelberg and Ulm 2019

Rare Disease Day in Heidelberg and Ulm 2019

February 28 is Rare Disease Day, which is celebrated all over the world. In cooperation with the Alliance of Chronic Rare Diseases – ACHSE e.V., the umbrella organization for rare diseases in Germany, the Organization for Rare Diseases in Germany...

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Matthiesen family launches fundraising campaign for MPAN research

Matthiesen family launches fundraising campaign for MPAN research

On 29 November, the Saarländischer Rundfunk (SR) drew attention to the family's situation and their fundraising campaign in an empathetic television report as part of its magazine "Wir im Saarland". It was only in September before that the Matthiesen family had been diagnosed...

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8th NBIA Family Conference in Germany 2018

8th NBIA Family Conference in Germany 2018

From September 21 to 22, 2018, our 8th NBIA Family Conference took place in Düsseldorf with more than 75 participants. In addition to family members and those affected, the participants included doctors, scientists and a team of youth workers. Most of the guests...

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News from Milly and her mission

News from Milly and her mission

On 22.12.2017, the Rhein-Neckar-Fernsehen (RNF) presented Milly and her family in the program RNFlife: http://www.rnf.de/mediathek/video/heidelberg-wie-die-kleine-emilia-gegen-ihre-gen-krankheit-ankaempft/ Emilia has BPAN. About a year ago, the parents...

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Progress at NBIA Symposium & NBIA Alliance Meeting

Progress at NBIA Symposium & NBIA Alliance Meeting

The latest research findings were presented at the 6th International Symposium on Neurodegeneration with Brain Iron Accumulation (NBIA) and Related Diseases. Around 70 doctors, scientists and patient representatives from 12 countries came to...

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TIRCON project ended with final conference in October 2015

TIRCON project ended with final conference in October 2015

In October 2015, the international research project TIRCON ("Treat Iron-Related Childhood-Onset Neurodegeneration"), which was funded by the European Union for four years, ended as planned. This event was celebrated with a major closing conference on 15 and...

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