
Research funding
Here we give you an overview of the development and principles of our research funding.
Since 2004 Hoffnungsbaum e.V. Funded or co-financed grants to support NBIA research projects, research infrastructure, medical care totaling several € 100,000 (see also Funded projects). Some of this funding has been awarded in close collaboration with our sister associations, especially in Italy and the USA, or within the framework of the NBIA Alliance. Proposals for individual projects submitted to Hoffnungsbaum are peer reviewed by scientists to ensure funding for qualified projects (see also Funding conditions).
Inspired by the NBIA Disorders Association, HoBa organized eight family conferences in Germany, which were always attended by clinicians and scientists from Germany and other European countries in addition to NBIA families. Some of the family conferences served as an opportunity to realize research-related activities on the occasion of these meetings, for example, among others, blood collections for the NBIA Disorders Association biobank in the USA in 2006.
A main aspect of Hoffnungsbaum's research funding has always been the intensive networking of relevant NBIA stakeholders and thus the facilitation of contacts between previously non-cooperating NBIA research groups. In 2005, 2007, 2009, and 2014, we supported the participation of European clinicians in NBIA symposia and family conferences in the USA and Europe with a total of approximately €2000.
In addition, we have initiated research projects, volunteered to advise researchers from both academia and biotech companies from the perspective of patient advocates, based on a growing lay experience in the field of NBIA research.
We regularly inform NBIA researchers about funding opportunities that have come to our attention. We provide non-material support, for example in the form of letters of support, for applications from NBIA scientists or consortia for funding, for example within the framework of the programs for rare diseases at the European level such as EJP-RD. We also contribute to the dissemination of information about ongoing clinical trials, whether to affected families or to physicians.
In 2011-2015, Hoffnungsbaum, as well as the NBIA Disorders Association, was a full partner of the EU-funded FP7 project TIRCON (Treat Iron-Related Childhood-Onset Neurodegeneration). (1). As the leader of the Dissemination Work Package, HoBa was a member of the TIRCON Scientific Steering Committee. TIRCON continues as an unfunded, loose, and expanded network of NBIA researchers and physicians, as does the steering committee that makes decisions about the NBIA patient registry and biobank. Patient organizations represented on this steering committee are the NBIA Disorders Association and Hoffnungsbaum .
At Publications you will find articles on other research projects that Hoffnungsbaum has supported financially, ideally or organizationally.
(1) In November 2011, the European Union funded an NBIA research consortium for 4 years to the tune of 5.2 million euros. Treat Iron-Related Childhood-Onset Neurodegeneration (TIRCON) consisted of 13 partners from eight countries. The scientific objectives of the TIRCON project were: to establish an international NBIA patient registry; to establish a biobank; to develop biomarkers for PKAN disease; to conduct a randomized clinical trial of the iron chelator deferiprone in PKAN; to develop pantethin derivatives for the treatment of PKAN
Calls for proposals and research grants
Here you can see calls for proposals that Hoffnungsbaum e.V. has supported, to whom grants have been awarded recently and in which research projects Hoffnungsbaum is involved. A tabular overview of all funded projects can be found at Funded projects.
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 Philadelphia Spenden für die Erforschung seltener Erkrankungen. Die 10. Ausgabe des Benefizradrennens wird am 10. Juni 2023...
Fundraising-Aktion des Lions-Club Mühlacker für Hoffnungsbaum e.V.
Mühlacker, Dezember 2022: Im Rahmen eines Club-Abends des Lions-Club Mühlacker hatte das Hoffnungsbaum e.V. Vorstandsmitglied Tiemo Durm die Möglichkeit einen Vortrag über den Verein sowie dessen Ziele und Hintergründe zu halten. Die Inhalte stießen beim Lions-Club...
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) ...
Mulled wine stand in aid of Hoffnungsbaum and Team Bananenflanke
The Sandbox Friends, Melanie Schratzenstaller, Michael Bogner, Stephan Thalhammer, Stefan Huber, Ramona Klement and Lisa Kaltenecker, from Eberspoint (south of Landshut) organized a mulled wine stand again on the first weekend in December after a break of two years...
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....
Cycling for BPAN - Million Dollar Bike Ride 2022 again a great success!
Video: NBIA DA It worked again - in 2022, the Million Dollar Bike Ride (MDBR, https://www.milliondollarbikeride.org/) at the University of Pennsylvania in Philadelphia once again far surpassed the US$20,000 mark: Nearly US$39,000 was raised....
Million Dollar Bike Ride research grant awarded to BPAN.
The Center for Rare Diseases at the University of Pennsylvania, supported by the NBIA DA, has awarded a research grant to study the role of iron in the NBIA disease BPAN. The $66,366 awarded will be given to Young-Ah Seo of the...
Current call for an MPAN grant reflects clearly defined priorities
Hoffnungsbaum e.V. is partnering with three sister organizations on a current call for grants of up to $145,000 for one two-year or two one-year MPAN research projects:...
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...
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...