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