Aktuelle Stipendienausschreibungen


Dear Researchers,


Please read the information below regarding an RFA for 2  one year grants totaling $51,020 each for the study of BPAN. Deadline for Letters of Interest (LOI) is September 10, 2018. For the second year we have partnered with the University of Pennsylvania Orphan Disease Center on these grants and hope there will be many grant applications to choose from. Please forward this email to any researcher you think might be interested.




Patricia Wood


NBIA Disorders Association

from  discovery to cure

Phone: 619 588-2315




NBIA Disorders Association Announces Research Grants for Neurodegeneration with Brain Iron Accumulation (NBIA)

August, 2018

Team NBIA Disorders represented the NBIA Disorders Association at the fifth annual Million Dollar Bike Ride for rare disorders in May. They, along with many BPAN families holding community fundraisers,

raised $52,040 for BPAN research and $50,000 was matched by the University of Pennsylvania’s Orphan Disease Center Pilot Grant Program.

Two grants of $51,020 each will be awarded for Beta-propeller Protein-Associated Neurodegeneration (BPAN).

For more information on this funding opportunity supported by NBIA Disorders Association,

please see below information from the Orphan Disease Center and also our website at  https://www.nbiadisorders.org/research/grants-program-funding-opportunities .



2018 Million Dollar Bike Ride Pilot Grant Program: Request for Applications


The 2018 Million Dollar Bike Ride Pilot Grant Program is now open!  The MDBR Pilot Grant Program provides a one-year grant to support research related to a rare disease represented in the 2018 Million Dollar Bike Ride.



The Orphan Disease Center (ODC) at the University of Pennsylvania is pleased to announce the 2018 Million Dollar Bike Ride Pilot Grant Program.  The program is now open and offering 39 different research grant opportunities focusing on 23 different rare diseases.   This program provides a one‐year grant to support research related to a rare disease represented in the 2018 Million Dollar Bike Ride. Number of awards and dollar amounts vary per disease based on fundraising totals by each disease team. This Request for Applications (RFA) is open to the international community.  All individuals holding a faculty‐level appointment at an academic institution or a senior scientific position at a non-profit institution or foundation are eligible to respond to this RFA.  


For more details about this grant program, rare disease focus areas, and how to apply, please visit the ODC website here.  Letters of Interest (LOIs) are due no later than Monday, September 10, 2018 by 8pm EST.  Please refer to our website for instructions on LOI submission.  


Please contact Samantha Charleston, Assistant Director of ODC  at scharle@upenn.edu, or (215) 573-6822 with any questions.




BPAN- A Neurodegeneration with Brain Iron Accumulation Disorder: Two $51,020 pilot grants are available for clinical and translational research studies related to the detection, diagnosis, or treatment of this rare, X-linked disorder caused by mutations in WDR45. BPAN typically is recognized in early childhood with delayed development and seizures. In adulthood, people with BPAN develop rapidly progressive parkinsonism. At the present time, symptoms may be treated but there are no cures.


Grants are expected to generate essential resources for the scientific community, advance knowledge about BPAN disease processes, and produce preliminary data to enable national and international funding to carry the work forward. Examples of priority topic areas include developing disease models that complement existing models, identifying biomarkers, delineating the molecular cascade that leads to early cellular changes, developing rational therapeutics, establishing outcome measures to be used in clinical trials, and developing other essential resources to substantially prepare the BPAN community for clinical trials. Natural history studies must have a component that includes participation in the International NBIA Patient Registry & Biobank. These grants are made possible by Team NBIA and BPAN families with the NBIA Disorders Association.



The Associazione Italiana Sindromi Neurodegenerative da Accumulo di Ferro (AISNAF) is the only Italian non-profit lay organization dedicated to the fight against neurodegeneration with brain iron accumulation (NBIA) in Italy. Born from the will of the parents in 2006, it has ever since raised public awareness of NBIA and acted as a catalyst to prompt the attention and interest of the scientific community towards the NBIA disorders. The AISNAF is a founding member of the International NBIA Alliance that gathers together 9 patient organizations.


The AISNAF is currently accepting applications for one-year research grants that will pave the way to new potential treatments for NBIA diseases. Funds were made available through contributions from AISNAF, Hoffnungsbaum e.V. (HoBa, Germany) and NBIA Disorders Association (NBIADA, USA). While AISNAF is the grant manager, all three funding organizations have equal responsibilities and rights, which includes nominating representatives to participate on the Scientific Advisory Board and Lay Review Board for each grant call.


Specifically, this is a three-track granting cycle that solicits proposals on the following diseases belonging to the NBIA current classification:

1) Pantothenate Kinase-Associated Neurodegeneration (PKAN)

2) Beta-propeller Protein-Associated Neurodegeneration (BPAN)

3) Mitochondrial-membrane Protein-Associated Neurodegeneration (MPAN)


Funds are available to support a one-year research project for up to € 40,000 per disease. Please, note that the three groups of proposals will be evaluated separately from each other and will access restricted funds. In each category, the research grant will be awarded only if proposals fall above the funding threshold established by the Scientific Advisory Board. We may elect not to make an award if no proposals meet this standard.

Deadlines and budget

Call opens July 2, 2018
Deadline for proposal submission September 15, 2018
Anticipated award announcement December 15, 2018
Project start date January 2019

Budget may be up to € 40,000 for a one-year project, including indirect costs, if applicable. Indirect costs are allowed up to a maximum of 10%.


This Call solicits basic, translational and/or clinical research proposals that explore novel research ideas on the mechanisms of PKAN, BPAN or MPAN, and that will pave the way to potential new treatments. This call is for innovative explorative projects that are not currently funded by other agencies. It is expected that the results originating from this type of research will lay the basis of future proposals to larger funding agencies.


Proposals must clearly describe the added value and the impact on disease understanding or on development of treatments for PKAN, BPAN or MPAN, and have clear aims achievable within one year. A well-defined and feasible project timeline must be presented, including milestones and contingency plans. A strategy to secure subsequent funding must also be presented.


Studies such as those on the natural history of disease that require access to relevant, well-characterized patient populations or suitable biomaterial collections must participate in entering data in the International NBIA Patient Registry and collaborate with the Biobank where applicable. A statement agreeing to this requirement must be included in the application.




Proposals will be evaluated by an ad hoc Scientific Advisory Board (SAB) made up of independent experts. In addition to AISNAF SAB, reviewers were also selected to participate by HoBa and NBIADA, as funding partners in this joint call (see here for details). All possible conflicts of interest will be carefully evaluated beforehand. Criteria for evaluation are: scientific quality, appropriateness of approaches, logic of experimental plan and methods, likelihood of success, long-term sustainability of the research program and potential to generate significant impact on the life of PKAN, BPAN or MPAN individuals.


Each proposal will receive a score and the proposals falling above the funding threshold (i.e. fundable projects) will be evaluated by the Lay Review Board (LRB) that comprises NBIA family members recommended by each of the funding partners. The LRB will choose those that best suit the scope of the Call and the vision of the families from the fundable proposals for each of the three diseases.


All applicants will receive written feedback at the end of the evaluation process.

Reviewers will be bound to strict confidentiality about the matters that come to their knowledge during the review process.



To be eligible for this award, applicants must be:

  • Scientifically independent (early career investigators, i.e. senior post-doctoral fellows, research associates and assistant professors, are eligible for this Call provided that their salary is covered by the Host Institution throughout the funding period – Host Institutions must sign a formal declaration);
  • Affiliated with a public or private non-profit research institution.

Host Institution Agreement

Applicant’s Host Institution (HI) is required to sign a letter of agreement that must be printed on paper bearing the official letterhead of the HI itself and sent as pdf together with the application.


A template of the HI Agreement can be found here.

International applicants are welcome


All documents must be submitted in English. The research can be conducted in the United States, countries of the European Union, Canada, Australia, New Zealand, Brazil, Argentina, Chile, South Africa, Japan, or Israel, and in other countries where adequate supervision of grant administration is possible.


The awardees will be required to provide an interim scientific report (after six months from project start date) and a final report at the end of the funding period, including financial details to substantiate the use of the awarded funds. It is anticipated that AISNAF and/or the partners (i.e. NBIADA and HoBa) might invite the awardees to present their findings at their family conference meetings.


Grant agreement

Awardees and their Institutions will be asked to sign a Grant Agreement with a project start date of no later than January 31, 2019.


Further Information

  • If study involves humans, copies of the Informed Consent will be required, and if study involves humans or animals the Institutional Review Board (Ethics Committee) approvals will be required from each site involved in the study before payment.
  • Clinical drug trials must meet the requirements established by the European Medicine Agency (EMA) and/or the Food and Drug Administration (FDA).
  • All publications resulting from the research funded must acknowledge AISNAF, HoBa and NBIADA and should be provided to AISNAF when published for dissemination.
  • Grant recipients will receive 1 year funding in three stages: 1/3 at start of project; 1/3 at six months after interim scientific and financial reports are submitted and approved; and the final 1/3 payment at the conclusion of the grant after final scientific and financial reports are submitted and approved. The PI must submit a final scientific & financial report within three months of the end of the Grant Period unless an extension is granted. Grant recipients not in compliance with this requirement may forfeit their final payment.
  • AISNAF must be informed immediately of any change to the status of the PI or other important contributors to the project which might affect their ability to comply with grant conditions.
  • If the interim or final reports reflect serious deviations from the grant objectives and cannot be explained adequately, forfeiture of funds due or termination of the grant award may be warranted.
  • All research papers that have been accepted for publication in a peer-reviewed journal, and are supported in whole or in part by the Grant, must be made available at NIH PubMed Central as soon as possible, and in any event within six months of publication, in line with an Open Access policy.
  • It is recommended that research resources, including model organisms, developed under this funding initiative must be shared. Please include a sharing plan in your proposal.



Read and follow the instructions carefully


Use English language only.


Formatting guidelines

Font: Times New Roman


Type font: 12 point


Spacing: Single-spaced between lines of text and double-spaced between paragraphs (please, do not exceed the character number limitations specified which include spaces).


Please carefully follow these guidelines to assemble your proposal and send it by email as an attached pdf.



Applicants are requested to limit the number of figures used and to not copy sections of already published papers.


Figures can be uploaded in the following sections: Preliminary Results and Research Plan. Graphs or charts can be placed here as well. Use high resolution pictures only for photographs that require details.



Proposal must contain all the following sections and be sent as one pdf file:

  1. Cover Letter (please use the form downloadable here)
  2. Principal Investigator (please use the form downloadable here for biosketch and bibliography)

Please note that the project may have only one PI. Multi-centre projects with more than one lab involved requesting financial support are not eligible for this funding initiative.

  1. Scientific information:

I. Abstract (max 2000 chars). Organize the abstract into separate sections:

  • Broad objectives
  • Background and Rationale
  • Research design and methods for achieving the stated objectives
  • Relevance and Anticipated output

II. Background and Rationale (max 8000 chars). Present background information and a rationale for the proposed study plan using the scientific literature and previously published or preliminary data (if available).

III. Preliminary results (max 5000 chars). In order to support your hypothesis, if possible please provide any preliminary data produced in your lab that is pertinent to the proposed study. However, preliminary data is not mandatory for this type of funding initiative.

IV. Research Plan (max 12000 chars). List the Specific Aims of the project. Provide a description of each one and of the experimental plan to achieve it. Explain the aim for collaborations, if any. Provide a timeline for the different Specific Aims (Gantt chart or similar).

V. Collaborations (max 5000 chars). Please note that budget cannot be allocated for collaborators. If collaborations are envisaged, indicate who the collaborators are (specifying name and institution and providing a brief bio sketch) and describe the approaches each collaborator will bring to the overall study. Please note that all listed collaborations must be supported by collaboration letters written in English, which must be attached to the proposal.

VI. Cited Literature (max 20000 chars). List all references. The list must include the names of all authors, year of publication, title, book or journal, volume number and page numbers.

VII. Host Institution. Provide information about the facilities and resources available for you at the Host Institution, including lab and office space, major equipment and core facilities and services available. The Host Institution (HI) has to provide a letter of acceptance of the project being conducted within the Institution itself (Host Institution Agreement). The letter must be signed by the Director or other Responsible Official of the HI. The letter has to be sent as pdf together with proposal. Failure to submit the Host Institution Agreement may result in exclusion from review (please find the form for HI Agreement here).

VIII. Budget. The maximum budget allowed is € 40,000 (forty thousand euros). Please arrange the budget into a table followed by a paragraph for budget description/justification. The table should list the following items and the related expenses in Euro (use whole numbers only):

– Materials, Supplies, Services: List by category: Services include items such as Animal Housing (justify the total no. of animals needed and the cost per diem), Sequencing, Peptide Synthesis, etc. Major cost items should be listed and properly justified.

– The salary of only one project’s staff member (postgraduate, postdoc, technician, etc.) The salary should be determined by the time spent dedicated to the project.

– Other expenses: i.e. publication costs, samples, animal shipments and others.

Please note that the following costs are not covered:

– Equipment of any type

– Salary for Principal Investigator

IX. Other financial support. List all financial support available or grant applications pending in your lab that are pertinent to research on NBIA, including: title of grant, coordinator, funding body, budget, funding period, research supported by the grant (two lines).

X. Personnel. List the people involved in the project indicating: name, surname, date of birth, degree, role on the project, type of contract at the Host Institution, end date of contract, if the salary has been requested, annual effort on the project (% of time).

XI. Lay summary (max 5000 chars). This section is crucial for the lay evaluation that will be performed by the Lay Review Committee (LRC). The LRC is comprised of nine representatives from the NBIA family community who are nominated by the funding organizations. LRC members will evaluate and select only projects that are recommended for funding by the SAB. The lay reviewer’s role is not to comment on the quality of research or on the science behind it, but to ensure that the research aims are aligned with the scopes of the funding organizations and of paramount importance to NBIA families. To facilitate the lay review, provide a description of the project avoiding the use of jargon, complex terms and phrases and use plain English. Focus on the significance of the research and how it will be instrumental for the design of novel disease-modifying therapies.

4. Consent to the processing of personal data. Please download the form here, print, sign and send it together with your application.

Please note that failure to submit all requested information

will result in exclusion from further review.


Document must be a single pdf with file name “2018 AISNAF Grant Application-your last name/DISORDER,” and emailed to info@aisnaf.org no later than September 15, 2018.


Dear Researchers,


The NBIA Disorders Association is currently accepting applications for clinical and translational research studies related to the early detection, diagnosis, or treatment of patients with Beta-propeller Protein-Associated Neurodegeneration (BPAN), caused by mutations in the gene WDR45, located on the X chromosome.


We are offering two types of grants this grant cycle: 1) $45,000 one year grant open to all researchers interested in BPAN; 2) $75,000 per year for two years with option for third year  for early-career faculty investigator grant.


For more information and our grant applications, please visit our website at http://www.nbiadisorders.org/research/grants-program-funding-opportunities


Grant Application Deadline for both grants is  June 15, 2018.


Please forward this announcement to any other researchers, forums, and others you think might be interested. We would like to reach out to scientists in human genetics, neurology, neurobiology and other complementary areas of study to encourage new researchers to consider NBIA disorders as a field of study.





Patricia Wood


NBIA Disorders Association

from  discovery to cure

Phone: 619 588-2315





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