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Hoffnungsbaum-Newsletter

Association for the promotion of research and treatment of NBIA diseases
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There is news about NBIA!

You can access all contributions at any time at News on our website.

Cycling for BPAN research - Million Dollar Bike Ride 2023

Cycling for BPAN research - Million Dollar Bike Ride 2023
This year, the Million Dollar Bike Ride (MDBR) at the University of Pennsylvania in Philadelphia is once again raising funds for research into rare diseases. The 10th edition of the charity bike race will take place on June 10, 2023. https://www.milliondollarbikeride.org/ It is once again possible to take part virtually. This gives us in Germany the chance to be part of it again. Be it just by collecting donations or ...

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Fundraising campaign by the Mühlacker Lions Club for Hoffnungsbaum e.V.

Fundraising campaign by the Mühlacker Lions Club for Hoffnungsbaum e.V.
Mühlacker, December 2022: As part of a club evening organized by the Mühlacker Lions Club, board member Hoffnungsbaum e.V. Board member Tiemo Durm had the opportunity to give a presentation about the association and its aims and background. The contents were very well received by the Lions Club Mühlacker, which is why it was decided at the board meeting and general meeting to support Hoffnunsgbaum e.V. with a suitable fundraising campaign. picture: Handover of donations - ...

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International NBIA Symposium held in Switzerland in October 2022

International NBIA Symposium held in Switzerland in October 2022
In 2020, the last NBIA scientists' meeting only took place online due to the pandemic. In October 2022, for the first time since 2017, numerous players in NBIA research finally met again in person for 3 days at the 8th International NBIA Symposium in Lausanne.Group photo with participants at the 8th NBIA Symposium 2022 in Lausanne The conference attracted 80 official participants from 14 countries, 28 of whom were speakers. Including ...

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Care guidelines for PLAN are now in progress

Translation of an English article by Patricia Wood Thanks to the support of four organizations funding the project, consensus guidelines for the treatment and care of a form of NBIA known as PLAN or PLA2G6-associated neurodegeneration are now in the works. This is the third NBIA disorder for which researchers have developed best practices. The other two are ...

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INAD gene therapy is one step closer

INAD gene therapy is one step closer
Abridged translation of an English article by Patricia Wood Work on a gene therapy for Infantile Neuroaxonal Dystrophy, known as INAD, got a big boost in October when a London biotech company announced its intention to help bring the therapy to market. The London-based company, Bloomsbury Genetic Therapies Limited, known as Bloomsbury, plans to further its efforts with the help of a ...

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PKAN study with CoA-Z completed in the USA

Oregon Health & Science University in Portland (USA) conducted a 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 completed and data analysis has begun with the aim of determining the safety and tolerability of CoA-Z and ...

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Recordings of the online lectures available on YouTube


If you missed one of the online presentations, you can watch the recordings on our YouTube channel:
https://www.youtube.com/@hoffnungsbaum_nbia

You can find an overview of all previous and planned online lectures here:
https://www.hoffnungsbaum.de/aktuell/online-vortraege/

Online donations now possible!


For a few weeks now, it has also been possible to donate directly via our website using SEPA direct debit or PayPal. This simplifies donations enormously and also largely automates the administration of donations for us. Even though donations can still be made by bank transfer, please make use of the new options, as this reduces the administrative workload for us. Donate now!
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New Hoffnungsbaum flyer available

Info flyer
The information flyer, which was created from scratch, can be downloaded via info@hoffnungsbaum.de can be ordered free of charge. You are welcome to view the flyer online in advance:
Download info flyer

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Hoffnungsbaum e.V.
Association for the promotion of research and treatment of NBIA diseases
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