Here, we provide an overview of the development and principles of our research funding.

Since 2004, Hoffnungsbaum e.V. has financed or co-financed grants totaling several €100,000 to support NBIA research projects, research infrastructure, and medical care (see also Project funding). A portion of these funds was awarded in close collaboration with our sister organizations, particularly in Italy and the USA, or within the NBIA Alliance. Proposals for individual projects submitted to Hoffnungsbaum are reviewed by scientists (peer review) to ensure the funding of qualified projects (see also Funding conditions).

Inspired by the NBIA Disorders Association, HoBa organized eight family conferences in Germany, which were attended not only by NBIA families but also by clinicians and scientists from Germany and other European countries. Some of the family conferences served as opportunities to carry out research-related activities during these meetings, such as blood draws for the NBIA Disorders Association's biobank in the USA in 2006.

A key aspect of Hoffnungsbaum's research funding has always been the intensive networking of relevant NBIA stakeholders and thus the establishment of contact 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, and researchers from both academia and biotech companies have received voluntary advice from the perspective of patient representatives, based on growing lay experience in the field of NBIA research.

We regularly inform NBIA researchers about funding opportunities that we have become aware of. 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 programs for rare diseases at the European level such as EJP-RD. We also contribute to the dissemination of information about ongoing clinical trials, be it to affected families or to physicians.

From 2011-2015, Hoffnungsbaum, like the NBIA Disorders Association, was a full partner in the EU-funded FP7 project TIRCON (Treat Iron-Related Childhood-Onset Neurodegeneration) (1). As head of the “Dissemination” work package, HoBa was a member of the TIRCON Scientific Steering Committee. TIRCON continues to exist as an unfunded, loose and extended network of NBIA researchers and physicians, as does the Steering Committee, which makes decisions on the NBIA patient registry and biobank. The NBIA Disorders Association and Hoffnungsbaum are represented in this Steering Committee as patient organizations.

At Publications you can 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 with 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: the establishment of an international NBIA patient registry; the establishment of a biobank; the development of biomarkers for the disease PKAN, the implementation of a randomized clinical trial with the iron chelator Deferiprone in PKAN; the development of pantethine derivatives for the treatment of PKAN