Here we give you an overview of the development and principles of our research funding.

Since 2004 Hoffnungsbaum e.V. has financed or co-financed grants to promote NBIA research projects, research infrastructure and medical care totaling several € 100,000 (see also Funded projects). Some of these funds were awarded in close cooperation with our sister associations, particularly in Italy and the USA, or as part of the NBIA alliance. The proposals for individual projects submitted to Hoffnungsbaum are reviewed by scientists (peer review) to ensure that qualified projects are funded (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 the NBIA families. Some of the family conferences served as an opportunity to realize research-related activities on the occasion of these meetings, for example blood collections for the biobank of the NBIA Disorders Association in the USA in 2006.

One of the main aspects of Hoffnungsbaum's research funding has always been the intensive networking of relevant NBIA stakeholders and thus the establishment 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 around € 2000.

In addition, we have initiated research projects, volunteered to advise researchers from both academia and biotech companies from a patient representative perspective, 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 as part of the programs for rare diseases at European level such as EJP-RD. We also contribute to the dissemination of information about ongoing clinical trials, whether to affected families or doctors.

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 that makes decisions on the NBIA patient registry and biobank. As patient organizations, the NBIA Disorders Association and Hoffnungsbaum are represented on this steering committee.

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: 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 chelating agent deferiprone in PKAN; the development of pantethine derivatives for the treatment of PKAN