Click here to read about the Award recipients.

Application Process

Eligibility and Project Information

Budgeting

Tool Evaluation

Tool Translation/Use in Other Countries

Tool and Booklets

Misc.

Is a Letter of Intent required?
A Letter of Intent is not necessary, but it is encouraged to give us an idea of how many applications we will be receiving.

Is there a preferred format for the workplan?
We do not have a workplan template. Please be neat and arrange items in chronological order and/or grouped by project area.

What should be included in the eight pages of narrative, and what is included in the appendices?
Full proposals must include the following:

Should the narrative be double-spaced?
The narrative does not need to be double-spaced. Use as many pages as you need (up to the eight page limit) to detail your project.

Is there an online form for proposal submission?
No. Proposals will be accepted in the same way as letters of intent: via email.

How many bids can an institution have for this project?
The number of proposals an institution may submit is unlimited.

How are the proposals being scored?
The assessment criteria for the Award is in the RFP (available for download here). In addition, we will be issuing a more detailed sheet of what we will be giving to the reviewers.

To whom should the letters of support be addressed?
Letters of support should be addressed to you. The authors will say, “Dear X, we support your application for funding, etc.”

Should the letters of support be sent directly to you via email, or should we collect letters of support and submit them with our proposal (via email)?
It would be best for your entire application to come as one, with letters of support included along with your proposal, resumes, budget, etc.—all sent to Ms. Vaughn Edelson via email: vedelson@geneticalliance.org.

Do you want the proposal written in a formal academic research style with references to articles/ research?
If you have references, please cite them.

Do you have requirements for font size?
Please use a regular 12pt font.

Do you have a format for CVs and a preferred page limit?
We use a biographical sketch format (includes education, positions/professional experience, honors, selected publications, and research/grant work), but this is not required. Please limit CVs to two pages.

Is the Friday, 5/9, 8:00 PM deadline for electronic submission? Does that include letters of support?
The Friday, 5/9, deadline is for all submissions, including all part of the application. Electronic submission is encouraged. It is preferred that all pieces of the application be submitted together (narrative, budget, CVs, and letters of support).

While we included a description of our organization in the LOI, the application doesn’t seem to have a place to describe ourselves again. Should we?
Yes. Please include a description of your organization in the eight-page narrative. When describing the program into which you will be integrating the Does it Run in the Family? toolkit, you should also provide some background on your organization itself.

If we decide not to apply in this round, is there another open enrollment time? Do you think that this will be offered next year?
We have no plans to do another round of Awards. The funding we are distributing comes from our own cooperative agreement with HRSA, which ends May 31, 2009. The tool will still be available for anyone who wants to use it, for only the cost of printing. We are always open to new ideas and partnership and dissemination opportunities. Please contact us.

How detailed do projects need to be?
It is up to the community to determine what is most useful. Use the following questions as a guide: How is this going to impact my community? Why is this the best thing I can do within this budget to impact my community? We would like to see this thought process reflected in your application.

We are a small, rare disease group serving less than 400 families in the US. Will this reflect negatively on our application?
The size of your organization will not reflect negatively on your application. We are looking for all different types of perspectives. One of the major purposes of this project is to create model projects for future users of the customizable online tool. We want to have model projects for small and large organizations; the tool can be used by a family doing a big reunion, as well as by a national healthcare organization.

Will organizations with large medical centers be viewed as positive distribution channels, or are you looking for more outside-the-box thinking?
Large medical centers will not be viewed negatively; we are looking for the range. It is not just about thinking outside the box (though that is certainly one of the things we are looking at). It is about effectiveness and success in reaching out to different communities. Integrating the tool into a large medical center is, frankly, something outside the box. Tell us what has been done, and let us know how you are improving current systems.

Can I partner with a for-profit organization?
Yes. For-profit organizations are also welcome to apply. We are looking for creative uses of the tool in any forum, by any type of community (using a very broad definition of community).

We are part of a small, rare disease coalition that has limited face-to-face contact with our families, so our resources for dissemination are limited. Will using the toolkit with a newsletter or mass mailing be frowned upon?
We have tried to make the Awards large enough that printing can be done. However, the tool allows for document export as a PDF. So if you have other ideas and methods of distribution that will be more effective with your community than printing and mailing the booklets, those are welcome. One of the original CCFHH partners is putting the tool in a patient portal on their website because a lot of their users access the services that way. The emphasis in your proposal should be on why the chosen method is most appropriate.

If we have a brochure that we have already developed, would this work with the grant?
Yes. One of the examples we came up with is pairing our tool with existing resources. The first thing that came to mind was the Surgeon General’s Family Health History Initiative, but others are welcome.

Must the timeline depicted in the proposal be adhered to, or is it a sample?
We want to maximize time working with the target community, and adherence to timeline is part of the evaluation criteria. We don’t want communities to wait until October, November, etc. to receive the booklets without any contact/interaction from the Awardee organization. However, if part of the work with the community is the booklet customization process, please make that clear in the application. Clearly justify your reasons for any dates that have been extended. We’ve been through the customization process with several communities, so we know the challenges. But we want to make sure there is ample time to work with the final product.

If the model project report is due on 4/15 but funding continues through 5/31, is it assumed that implementation activities after 4/15 are just not reported?
Based on the timeline provided in the RFP, projects should be wrapping up by March so that the model projects can be written by April 15. However, because we want these projects integrated, it means they should be ongoing after April 15, and even after May 31, 2009. We would appreciate supplemental information and updates on progress after the reports are due, but the reports will cover activity to that date.

What is the estimated cost per booklet?
Booklets printed in small quantities are more expensive than booklets printed in large quantities. Here are some approximate prices. The prices assume that you print the given quantity of both booklets.

Is there a preferred format for budget narrative?
Yes, please use this form for budget narrative and this form for budget.

Is there a required or suggested percentage of in-kind funding to be provided by the agency?
No, but please keep a record of all in-kind contributions.

Do you provide indirect costs as part of the Award?
We will not be providing for indirect costs as part of the Awards. Given the relatively small amount of the Awards ($10,000), we feel it would put a limit on the productivity and effectiveness of awardee programs to account for indirect costs.

Do the booklet prices include shipping, or is that a separate charge?
The booklet prices are for printing only and do not include shipping, as shipping costs will vary depending on the quantity of booklets ordered and the location to which they are shipped.

What is the evaluation component of the project?
The only required evaluation is of the customizable online tool itself, which will help us perfect the tool for future users. This should be done by the person(s) who actually perform(s) the customization online: enters the site; chooses stories, photos, etc.; downloads; and prints. We are interested in your review of the functionality and presentation of the tool. An evaluation with the community is not required. Evaluation can be extremely expensive, and we realize the restrictions of a $10,000 award. Additionally, due to the range of communities and projects, sample sizes would be too small for a formal evaluation.

Our present partners are currently wrapping up the evaluation phase of the project. Each partner has engaged 25 families (two to three family members related by blood) who work with the booklets for three months and complete pre- and post-use evaluations that look at the utility of the booklets, the impact of family health history on health decision-making, and whether providers follow-up.

If you are interested in using the tool and doing a formal evaluation project, please contact us. The use of the tool is not limited to these Awards. We look forward to partnering with organizations that want to do more far-reaching projects than can be encompassed by the Awards we are offering at this time.

Are your current evaluation projects tied to the CDC Family Healthware project?
’s tool because that was the tool publicly available at the time the booklets were developed. But we are interested in pairing our tool with others. The CDC’s tool does risk assessment, an important step in the process of translating the initial conversation about health into better health choices, treatment, diagnosis, etc. National Council of La Raza, one of our original partners, has a flipchart used in training their Promotores de Salud, and our tool is an excellent follow-up to that.

Family health history is a great bridge between health, family and culture, and shared experiences. For this reason, the projects into which you integrate the tool do not have to be health projects. Incorporating health into conversations in other outreach arenas is a way to take great strides toward reducing health stigma so that people can talk about health in their daily lives.

Is there a Spanish version?
A Spanish version of the customizable online tool is available. Awardees will only be able to use the English version. We are happy to work later with groups who are interested in using the Spanish version.

Can we start the program in the US and then extend it to other countries?
The awardees must be based in the US because of our own funding requirements. But the customizable online tool is designed to be used internationally. The tool has been translated into Spanish in early 2009, and we are working to translate the books into other languages. If you are interested in doing other creative projects around the tool, even outside the scope of this award, please contact us. We want people to think big and think creatively.

Our rare disease organization has satellite support groups in Canada, Germany, Spain, Australia, and the UK. How easily would the work product be transferable to these other groups for their use?
Very few problems should arise when using the booklets in other countries. We developed the booklets to be accessible to a range of communities. Translation is the most obvious barrier and necessary consideration.

We would be interested in working with anyone who wants to translate the tool into other languages. English will be the only language available for use during the Awards, but we can allow people access to some of the materials, including design pieces, if they are interested in doing translation with their groups.

How are the booklets printed?
The customizable tool itself will be linked to a printer. You customize, hit print, and specify quantity, address, etc. The option will also be available to download a PDF so that a local printer can be used if desired.

Do all printed booklets need to be distributed by February 29, 2009, or is it possible to print extra during the grant period to be incorporated into future programs?
Because we’d like these projects to be sustainable beyond May 31, 2009, it would be okay to print a larger quantity than initially necessary. But we’d like the bulk to be for the project during the funding period. We want to see that you are using the money in the best possible ways to get the tool integrated.

Once the toolkit is customized, would we have access to it electronically?
Yes, after customization, booklets can be downloaded to your desktop, as well as printed through the linked printer.

What are the extent and types of changes to the booklets that will be available?
The parts of the booklets that can be changed can be found in the template versions of Book 1 and Book 2. For all stories, quotes, photos, and condition pages, you will have the option of selecting from existing options in a provided library or inputting your own.

Will there be additional information about the online version, or will it be possible to view it prior to submitting proposals?
The online customization tool will not be ready for use until the start of the Award period. Basically, it will show the booklets page by page, highlighting all customizable portions. Users will be able to input their own information or choose from provided file libraries. For more information, please contact Vaughn Edelson: vedelson@geneticalliance.org.

For postal calculation, how much do the booklets weigh?
Together, the two booklets weigh slightly less than 4 ounces.

How much time should be allocated for printing booklets after customization?
It depends on where you are located in the country (our printer is based in Baltimore, MD), but allocating two weeks for booklet turn-around should be sufficient.

Where can I download the PowerPoint presentation from the information webinar?
You can download the presentation here or listen to the recording here. PowerPoints for all of our Strategies for Success sessions and other webinars are on our website at www.geneticalliance.org/webinars. You can listen to recordings of all past webinars, sign up for podcasts, and view slideshows.

Will the meetings between Genetic Alliance and Awardees before the grant period begins be in person?
It will not be necessary to meet in person. If the Awardee is local to the Washington, DC metro area, an in-person meeting would be preferred. Otherwise, teleconferences can be arranged.

For more information:
Vaughn Edelson, Program Coordinator
Phone: 202.966.5557 x213
Email: vedelson@geneticalliance.org