Association chronicle

Focal points and milestones of the association's work of Hoffnungsbaum e.V. since 2002

After 17 years of club history, Hoffnungsbaum In 2019, a total of 91 association members, representing 48 affected families. There were or are contacts with about 150 other affected families outside our association, many of them also abroad. The University Hospital of Munich, with the support of Hoffnungsbaum as the only clinical center with special NBIA expertise in Germany and to strengthen the network of contacts of Hoffnungsbaum to other clinics and doctors with NBIA experience. Since 2012, 72 diagnostic and counselling folders have been distributed to German-speaking NBIA families, often shortly after diagnosis. We were able to create and distribute 16 newsletters and 2 special supplements. We have supported the emergence of other NBIA patient organizations in other countries in an advisory capacity and are instrumental in managing the affairs of the NBIA Alliance in cooperation with the NBIA Disorders Association. From 2011 to 2015, we were partners in an international research project funded by the European Union with its own area of responsibility. All of this and the priorities and milestones of our work listed below are just the tip of the iceberg that we work through every day – while at the same time being affected families ourselves. We would like to thank all those who support and accompany us.



  • Organization of an event on the occasion of the Day of Rare Diseases in Heidelberg with a lecture on NBIA by the Vice Chairman of Hoffnungsbaum

  • HoBa information table and lecture on Hoffnungsbaum by a board member at the Action Day for Rare Diseases in Ulm

  • First strategy meeting of the Board of Directors of Hoffnungsbaum in Heidelberg and establishment of a fundraising working group and a research working group

  • Second joint call for research fellowships from AISNAF, Hoffnungsbaum and NBIA Disorders Association

  • Award of a research fellowship to Northwestern University, Chicago, USA on the role of iron in the disease mechanisms of BPAN

  • Participation of the Vice-Chairman of Hoffnungsbaum at a panel discussion at the Autophagy Congress in Tübingen

  • Participation of the Vice-Chairman of Hoffnungsbaum at a German-American workshop on autophagy diseases in New York and presentation of NBIA and Hoffnungsbaum There

  • 3rd edition of the NBIA Findings and Consultation Folder

  • Launch of the new website of Hoffnungsbaum

  • Hoffnungsbaum In 2019, the association received the highest amount of donations in its history, thanks in particular to the private fundraising activities of two affected families with BPAN and MPAN


  • Hiring a new part-time employee with reduced hours

  • Publication of a German translation of the PKAN treatment recommendations on the website of Hoffnungsbaum

  • Participation of HoBa members in events on the occasion of the Day of Rare Diseases in Heidelberg and Ulm

  • First joint call for research fellowships by AISNAF, Hoffnungsbaum and NBIA Disorders Association

  • Awarded 2 PKAN research fellowships to the University of North Carolina, USA, to develop a gene therapy and to the University of Brescia, Italy, to explore a zebrafish model

  • 8th NBIA Family Conference in Germany with 23 families (76 participants)

  • In the new board of directors of Hoffnungsbaum For the first time, 2 relatives of BPAN patients are represented

  • The implementation of the new General Data Protection Regulation requires a lot of time.


  • Preparation and publication of a patient-oriented NBIA disease description on the Orphanet portal as part of the ACHSE project "Improving access to good patient information" and keynote speech at a workshop on this project

  • Contributed to the finalization of the treatment recommendations for PKAN and publication of the article in the medical journal "Molecular Genetics and Metabolism

  • Participation of the HoBa employee at the NBIA Scientific Conference in Stevenson (USA)

  • Financial participation of Hoffnungsbaum in follow-up funding for the NBIA Patient Registry

  • Since 2017, targeted fundraising for individual NBIA variants by affected families. Milly's Mission fundraising campaign for BPAN research marks the beginning of this development.

  • Publication of a list of laboratories offering molecular genetic diagnostics for NBIA in Germany on the website of the NBIA Alliance


  • As part of the follow-up funding of the NBIA International Patient Registry and the Biobank through the NBIA Alliance, Hoffnungsbaum the first instalment payment and organises the funding from the other Alliance partners for the registry and biobank

  • The chairwoman will give a lecture at a satellite symposium at the annual meeting of the German Society for Pediatrics and Adolescent Medicine (DGKJ) in Hamburg on "NBIA in medical care. Opportunities and Challenges from a Patient's Perspective"

  • Revision and update of the NBIA disease description on the Children's Network website


  • Participation of a HoBa board member at the event for the Day of Rare Diseases in Hanover with an information table

  • Participation of the Chair at the European Congress of Neuropediatricians in Vienna for the presentation of a poster about the NBIA Alliance

  • NBIA Info Table, Hoffnungsbaum e.V. and TIRCON at the Congress of the German Society of Neurology in Düsseldorf

  • Co-organization of the TIRCON final conference in Munich and participation

  • Organization of the 4th NBIA Alliance meeting in Munich as part of the TIRCON final conference. The NBIA Alliance decides to provide follow-up funding for the NBIA International Patient Registry and the Biobank after the end of the EU project TIRCON

  • Participation in the ACHSE seminar "International Networking" in Berlin and presentation of the NBIA Alliance in a lecture by a board member


  • Participation in the European Conference on Rare Diseases in Berlin with presentation of a poster introducing the NBIA Alliance

  • Organization of the 3rd meeting of the NBIA Alliance in Berlin

  • 7th NBIA Family Conference in Germany with 15 families (69 participants)

  • Co-preparation and participation in the 3rd Scientific Symposium on Neuroacanthocytosis and NBIA in Stresa (Italy)

  • Hoffnungsbaum finances and organizes the awarding of travel grants to young scientists for their participation in the symposium in Stresa within the framework of the NBIA Alliance

  • Hoffnungsbaum receives the "Hertie Prize for Commitment and Self-Help 2014"


  • Lecture of the chairwoman and HoBa information table at a symposium on rare neurodegenerative diseases at the annual meeting of the Society of Neuropediatrics in Innsbruck

  • Dissemination of information on TIRCON clinical projects in patient-oriented brochures

  • Lecture by the chairwoman at the annual conference of the children's network in Aschaffenburg on the networking and cooperation of Hoffnungsbaum

  • Participation in the content development of the TIRCON patient registry

  • Participation in TIRCON conferences in Munich and Warsaw and monthly conference calls of the Steering Committee


  • Opening event of TIRCON in Munich. Hoffnungsbaum leads the working group on information dissemination in the project and is a member of the TIRCON Steering Committee.

  • Founding of the NBIA Alliance as an informal umbrella organization of NBIA patient organizations on the sidelines of the TIRCON meeting in Munich with NBIA patient representatives from 6 countries.

  • Hiring a part-time employee as a project assistant for TIRCON and assistant to the board

  • Presentation of Hoffnungsbaum and TIRCON on the occasion of the presentation of the Eva Luise Köhler Prize for Research on Rare Diseases, an event of ACHSE e.V., in Berlin

  • 6th NBIA Family Conference in Germany with 14 families from 4 countries (69 participants),

  • Introduction of an NBIA report and counselling folder as a service for affected families

  • Hoffnungsbaum sponsors the 2nd Scientific Symposium on Neuroacanthocytosis and NBIA in Ede, Netherlands. Using TIRCON as an example, the Chair will speak about the role of patient organisations in EU-funded research projects

  • Hoffnungsbaum e.V. organizes the second meeting of the NBIA Alliance in Ede, NL

  • Chairperson's participation in the EURORDIS meeting of European rare disease patient organisations in Paris and presentation of the role of the Tree of Hope in TIRCON

  • Own article about NBIA and TIRCON in "Dystonie aktuell", (German Dystonia Society)


  • Hoffnungsbaum receives the Children's Network Award for "Good Cooperation".

  • Through the mediation of Hoffnungsbaum a neuropaediatrician from the "Hauner Children's Hospital" in Munich will give a lecture on NBIA diseases at the annual meeting of the German Society for Pediatric and Adolescent Medicine (DGKJ) in Bielefeld

  • Hoffnungsbaum e.V., AISNAF and NBIA Disorders Association are jointly funding the development of treatment recommendations for PKAN at the University of Oregon.

  • The TIRCON consortium has been awarded a four-year international NBIA project by the EU.


  • Publication of the article on the retrospective study on the efficacy of deep brain stimulation in NBIA in the journal "BRAIN"

  • Participation of the chairperson at the opening meeting of the international neuroacanthocytosis (NA) research project EMINA in Munich

  • 5th Family Conference in Germany with 62 participants (15 families from 4 European countries) and collection of blood samples for a project on neuroacanthocytosis/PKAN

  • Participation of the chairperson in a meeting of the Munich NBIA and NA researchers with the NBIA experts from the University of Oregon (USA) in Munich, the nucleus of TIRCON

  • Application of the NBIA research consortium TIRCON with 13 partners from 8 countries for EU funding. Hoffnungsbaum e.V. and the NBIA Disorders Association are full partners in the consortium.

  • The chairwoman will speak for HoBa at MEDICA 2010 about cooperation between physicians and patient self-help


  • Travel Scholarship from Hoffnungsbaum for a neurologist at the University Hospital of Cologne, collaborator in the study on deep brain stimulation funded by us, to participate in the 5th NBIA Family Conference in the USA

  • Financial support for another study on deep brain stimulation in NBIA at the University Hospital Cologne.

  • First international conference call of the three NBIA patient organizations in the USA (NBIA Disorders Association), Germany (HoBa) and Italy (AISNAF) to explore future cooperation opportunities

  • The Chair talks about the research funding of HoBa at an NBIA Scientific Symposium in Munich on the occasion of the discovery of a new NBIA gene.


  • Participation of the Chairperson at the central event for the first "Day of Rare Diseases" in Berlin

  • 4th NBIA Family Conference with 12 affected families (52 participants)

  • As part of the conference, a neurologist from the University Hospital Göttingen conducted a study on ultrasound diagnostics in NBIA, as well as conference participation by neuroacanthocytosis (NA) researchers (PKAN is also considered NA)

  • Launch of the new HoBa website

  • Hoffnungsbaum employs a part-time employee for the first time as part of a mini-job.


  • Online articles about living with NBIA and Hoffnungsbaum e.V. in the EURORDIS newsletter

  • Travel Travel Scholarship from Hoffnungsbaum for the leader of the deep brain stimulation study we funded to participate in the 4th NBIA Family Conference in the USA.

  • For his study on the efficacy of deep brain stimulation in NBIA, Prof. Dr. Timmermann from the University Hospital of Cologne receives the Klüh Foundation's prize "for the promotion of innovation in research and science in the field of rare diseases"

  • Lecture at an event of the health policy working group of the CDU NRW on self-help work in rare diseases based on the work of Hoffnungsbaum e.V.


  • Participation of the chairperson at the Patient Day for Mitochondrial Diseases in Munich, personal meeting with doctors and scientists from the two Munich universities who are researching NBIA diseases or have shown interest in them.

  • Formation of the Medical Advisory Board for Hoffnungsbaum e.V.

  • Introduction of Hoffnungsbaum e.V. at the AOK Symposium on Rare Diseases and publication of an article, "Networking is everything", in the G+G spezial 11/2006 of the AOK

  • 3rd Family Conference with 11 affected families (58 participants), collection of blood samples for the NBIA BioBank in the USA

  • Funding of a retrospective multicenter study to investigate the efficacy of deep brain stimulation in NBIA patients at the Neurological University Hospital of Cologne


  • Membership of HoBa in the Children's Network, in ACHSE e.V. and in EURORDIS

  • HoBa supports the participation of two German scientists at the 2nd NBIA Scientific Symposium in Gaithersburg in the USA

  • Presentation by the Chairperson on Hoffnungsbaum e.V. and his work at the 3rd NBIA Family Conference in the USA.

  • The Hoffnungsbaum-Chairwoman becomes a member of the board of directors of the founding of ACHSE e.V. with a focus on "Research in Rare Diseases" (until 2008)

  • 2nd NBIA Family Conference in Germany with 7 affected families (45 participants)


  • Participation in a symposium of the Children's Network on Rare Diseases in Munich, thus establishing first contacts with the emerging "Alliance of Chronic Rare Diseases"

  • Hoffnungsbaum receives its own logo and publishes its first club flyer

  • First NBIA Family Conference in Germany with 8 affected families

  • ZDF report in "Hallo Deutschland" about the family conference of Hoffnungsbaum

  • Hoffnungsbaum provides a grant to an NBIA project at the University of Oregon, Portland, USA through the NBIA Disorders Association Research Fund


  • 11.2.2003: Entry in the register of associations

  • Publication of your own website

  • Publication of the own article "The Hallervorder-Spatz Syndrome (HSS) – NBIA" in the medical journal "Pediatric Practice" under the heading "We help further"

  • First Hoffnungsbaumnewsletter, which has been published in loose succession ever since

  • Launch of the family network and counselling for those affected


  • On 24.11.2002 founding meeting with 3 affected families, a total of 19 members

  • 10.12.2002 Non-profit status

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