q Latest posts | Hoffnungsbaum e.V.

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...

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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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Videos of the NBIA Family Conference 2023 in the USA online

Videos of the NBIA Family Conference 2023 in the USA online

For the first time since the pandemic, the NBIA Disorders Association hosted the 12th NBIA International Family Conference in the United States. For 4 days from May 18 to 21, 2023, a total of 70 NBIA families and 41 speakers, including some NBIA experts, came to Houston, Texas...

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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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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 German team of scientists, who received a $45,000 research grant from the NBIA Disorders Association in 2020, has successfully produced a stem cell model of FAHN to help researchers better understand the disease and how it can be treated.

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NBIA Family Conference 2022 postponed!

Hoffnungsbaum e.V. wanted to host the 9th NBIA Family Conference in Germany in September 2022 at the Heilbronn Youth Hostel. We were very much looking forward to finally being able to get an in-person meeting of NBIA families again after two years of pandemic.

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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) took place - 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 of year 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 again take place not only in the USA, but virtually all over the...

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Hoffnungsbaum Newsletter 2020

Hoffnungsbaum Newsletter 2020

We have once again put together a newsletter for you in 2020. It contains information on the association's activities in 2020 and an outlook for next year. If you would like to be kept up to date, please 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. conducted a broad-based opinion survey among all association members and 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. Joining forces in the research of BPAN Deciphering the causes of rare, neurodegenerative diseases is a lengthy process that is difficult for those affected with a lot of...

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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 tested for safety and efficacy in a placebo-controlled and multicenter double-blind clinical trial (FORT trial).

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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) was funded by the European Union. One of the main TIRCON sub-projects was a clinical study 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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Half marathon becomes BPAN charity run

Half marathon becomes 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 of our board member Markus Nielbock from the Max Planck Institute for Astronomy (MPIA) took part in the...

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News from Maya and the MPAN fundraising campaign

News from Maya and the MPAN fundraising campaign

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 older brother, she...

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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 collaboration with the Alliance of Chronic Rare Diseases - ACHSE e.V., the umbrella organization for rare diseases in Germany, a number of events will be held to mark the occasion....

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8th NBIA Family Conference in Germany 2018

8th NBIA Family Conference in Germany 2018

From 21 to 22 September 2018, our 8th NBIA Family Conference took place in Düsseldorf with more than 75 participants. In addition to family members and those affected, these 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, 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, her parents...

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Progress at NBIA Symposium & NBIA Alliance Meeting

Progress at NBIA Symposium & NBIA Alliance Meeting

At the 6th International Symposium on Neurodegeneration with Iron Storage in the Brain (NBIA) and Related Diseases, the latest research findings were presented. Around 70 doctors, scientists and patient representatives from 12 countries attended...

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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 marked by a grand final conference on 15 and 15 December.

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