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...

Latest posts

The most recent posts from all categories are displayed here.

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...

read more
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...

read more

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...

read more
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) ...

read more
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,...

read more
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....

read more

NBIA Family Conference 2022 postponed!

Hoffnungsbaum e.V. wanted to organize the 9th NBIA Family Conference in Germany in September 2022 in the youth hostel of 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....

read more
German-British family takes up the fight with BPAN

German-British family takes up the fight with BPAN

Kelly Sayers and Oliver Feiler are parents of two children: Max (8 years old) and Emily (5 years old). The family lives near London, England. 1 ½ years ago, they received the devastating news that Emily had BPAN. BPAN...

read more
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...

read more
Generation change in the Management Board of Hoffnungsbaum

Generation change in the Management Board of Hoffnungsbaum

On Nov. 21, 2021, the annual membership meeting of. Hoffnungsbaum e.V. (HoBa) took place - with groundbreaking decisions for the future of our NBIA patient organization through the completion of the generational change in the association's leadership and the reorganization...

read more
PKAN drug screening at Yale University.

PKAN drug screening at Yale University.

A new one-year PKAN research project has been underway at Yale University, New Haven (USA) since July 2021 under the leadership of Professor Choukri Ben Mamoun. The project, entitled: "A High-Throughput Screening for PKAN-Revising Agents," will be conducted in the...

read more
Cycling for Laurin as part of the Million Dollar Bike Ride

Cycling for Laurin as part of the Million Dollar Bike Ride

As part of the Million Dollar Bike Ride (MDBR), we started a fundraiser in our backyard at home in support of BPAN. Friends, relatives and acquaintances were invited to come by our house on their bikes and bring a donation. In return, there were fresh...

read more
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 take place not only in the USA, but virtually all over the...

read more
Hoffnungsbaum Info letter 2020

Hoffnungsbaum Info letter 2020

In 2020, we have again compiled an information letter for you. It contains information on the association's activities in 2020 and an outlook for next year. If you always want to be kept up to date, then subscribe to our online newsletter.

read more
PKAN family launches another fundraising campaign

PKAN family launches another fundraising campaign

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

read more

Results of the Hoffnungsbaum-survey 2020

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

read more

NBIA Symposium 2020 takes place online

 The 7th International Symposium on NBIA and Related Disorders will now be held virtually September 30 - October 3, 2020. Save the date for our virtual symposium! - Updates on new findings in NBIA diseases....

read more
7th International NBIA Symposium in Lausanne postponed!

7th International NBIA Symposium in Lausanne postponed!

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

read more
Hoffnungsbaum Information letter at the end of 2019

Hoffnungsbaum Information letter at the end of 2019

Hoffnungsbaum e.V. sent this winter for the last time a newsletter as a print edition, which is available here as a download: Hoffnungsbaum-Infobrief-Winter-2019 In the future, we will mainly be communicating via our New Website or via our...

read more
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 in research on BPAN Deciphering the causes of rare, neurodegenerative diseases is a lengthy process that involves a lot of effort for those affected by...

read more
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, as well as in my capacity as Second Chair of Hoffnungsbaum e.V., participated in a public panel discussion on "Autophagy and Its Importance for Health and Neurodegeneration." They...

read more

First results from FORT study for PKAN

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

read more
PKAN: results from clinical trial with deferiprone

PKAN: results from clinical trial with deferiprone

From 2011 - 2015, the international NBIA research project TIRCON (Treat Iron-Related Childhood-Onset Neurodegeneration) was financially supported by the European Union. A major TIRCON subproject was a clinical trial to investigate the safety...

read more
Benefit "Strong together for Maya" for MPAN research

Benefit "Strong together for Maya" for MPAN research

In Lauterbach, a large charity event was held on June 1, 2019. The fate of 12-year-old Maya, who has the NBIA variant MPAN, moves the whole village, many other people in the Saarland and beyond. They all want to support Maya and...

read more

MPAN can also be inherited in an autosomal dominant manner

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

read more
Half marathon became BPAN fundraising run

Half marathon became BPAN fundraising run

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

read more
Rhein-Neckar-Zeitung reports about Milly's mission

Rhein-Neckar-Zeitung reports about Milly's mission

February 28 is International Rare Disease Day. Around the globe, numerous events have already been taking place for days and also today to mark the occasion. The interest of the media is also great. Rare Disease Day is intended to draw attention to the...

read more
News from Maya and the MPAN fundraiser

News from Maya and the MPAN fundraiser

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

read more
Rare Disease Day in Heidelberg and Ulm 2019

Rare Disease Day in Heidelberg and Ulm 2019

February 28 is once again 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, events will be held to mark this...

read more
Matthiesen family launches fundraising campaign for MPAN research

Matthiesen family launches fundraising campaign for MPAN research

The Saarland Broadcasting Corporation (SR) drew attention to the family's situation and their fundraising campaign in a sensitive television report on November 29 as part of its magazine "Wir im Saarland" (We in Saarland). Just the previous September, the Matthiesen family had been diagnosed with...

read more
8th NBIA Family Conference in Germany 2018

8th NBIA Family Conference in Germany 2018

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

read more
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...

read more
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 Storage (NBIA) and Related Disorders. About 70 physicians, scientists and patient representatives from 12 countries came to...

read more
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 final conference on 15 and...

read more

Subscribe to our Hoffnungsbaum newsletter!

With our newsletter emails you will receive valuable information about NBIA. If you would like to subscribe to additional info on individual NBIA variants or special info for researchers/clinicians besides the general newsletter, please click here: Subscribe additional info

Privacy policy

You have successfully registered!