Hemophilia Association of New Jersey

Services >> PACT

The PACT Program and the PACT Foundation Grants are two exciting services that are available to other chapters/associations throughout the country. HANJ, under the direction of Elena Bostick, administers both programs through Shire sponsored grants.

Please review both programs and take note of featured deadlines as they are posted.


2017 PACT Foundation Grant Winners

  • Hemophilia Council of California
  • New England Hemophilia Association
  • Hemophilia Foundation of Minnesota/Dakotas
  • Rocky Mountain Hemophilia & Bleeding Disorders Association
  • Ohio Bleeding Disorder Council
  • Eastern Pennsylvania Chapter of NHF
  • Virginia Hemophilia Foundation & Hemophilia Association of the Capital Area
  • Bleeding Disorder Foundation of Washington

PACT Workshop Program

The Partnership for Advocacy and Communications Training (PACT) workshop is a one and a half day advocacy workshop, which is sponsored by an unrestricted educational grant from Shire, but facilitated and organized by the Hemophilia Association of New Jersey (HANJ). The goal of the workshop is to provide organizational development, education and enhanced advocacy skills to state hemophilia chapters and associations.

The workshop includes a combination of outside speakers from state government and private institutions as well as peer-to-peer education. Each participant will receive a binder with detailed case studies and sample letters on topics such as fundraising, advocacy and organizational and committee structure.

Dates for this year's workshop will be announced within the next few weeks. Participant expenses are fully reimbursed through the HANJ.

If you or one of your state organizations would like more information about the program please contact Elena Bostick at the Hemophilia Association of New Jersey office at 732-249-6000 or hemnj@comcast.net.

Purpose of the PACT Grant Program

Over the past several years the hemophilia consumer and provider community has had serious concerns regarding the changing health care environment. At issue has been the need to maintain quality care for all persons affected by hemophilia. The rapidly changing marketplace has raised questions about the future of hemophilia care delivery, and patient access to the full range of needed products and services, including access to the appropriate specialty providers who offer them. The challenge is to preserve policies and programs that ensure patient access.

It has become apparent that aggressive, state-based advocacy offers the greatest opportunity to identify and respond to potential threats and opportunities. In 2005 Shire agreed to fund a pilot program which would support state advocacy initiatives that are geared toward maintaining and/or expanding access to high quality care for persons with hemophilia. To date 92 grants have been awarded, totaling over $2 million.

As an example, some previously submitted PACT projects sought to:

  • Protect access to medicine and services through state legislation.
  • Conduct grassroots advocacy campaigns, directed at key decision makers, in an effort to preserve quality of care.
  • Provide a specific and valuable resource to consumers, individually, to help them maintain access.

Eligible Grant Expenses

Eligible Grant Expenses include, but are not limited to:

  • Partial Staff Salaries: As required to execute grant proposal. May include salary expenses for new staff, or to expand the role of existing staff.
  • Consultant Services: lobbyist, health insurance consultant, attorney, etc.
  • Travel and Lodging: Mileage/airfare to cover legislative and agency visits.
  • Printing and Production: Creation of background materials or newsletter that provides information and guidance regarding policy initiatives.
  • Web Site: Costs associated with the creation and timely maintenance of a web site that supports a specific advocacy need associated with access to care.
  • Conference and Workshop Fees: Funding to attend workshops and meetings associated with a specific area of advocacy.

PACT State Advocacy Grant Proposal Criteria

  1. Proposed project must pertain to a specific program of state advocacy, either current or proposed, to be conducted by the applicant.
  2. Proposed project must define:
    a) An identified problem
    b) Methodology to address problem
    c) Anticipated outcome
    d) Budget
  3. More than one proposed project may be submitted for consideration, however, projects must be defined individually for each application submitted,
  4. Multi-year requests may be submitted but will be considered one year at a time, and must specify intermittent goals and benchmarks. Subsequent year funding is not assured.
  5. Additional consideration will be given to proposals that demonstrate sustainability of the effort by leveraging resources beyond the grant itself. These resources may be additional funding, in-kind contributions, or both.
  6. Additional consideration will also be given to proposals that address a broad based concern and indicate how the project could be replicated in other states.**
  7. Applicant must possess certification of tax-exempt status.
  8. Maximum funding request, per project is $25,000.
  9. Applications must be received on or before the deadline date.
  10. Letters of support from HTC's, State Departments of Health, or other community-based organizations are helpful, but not required.

Proposal Outline

Agency Data:
Agency Official:
Statement of the Problem:
Proposed Methods of Accomplishment:
Evaluation Procedure:
Budget, including additional anticipated resources if any

a.Certification of non-profit tax exempt status
b. Officers and Directors' list
c. Letter of support
d. Copy of year-end financial statement

PACT Grant Review Committee

Eligible grantees will be selected by a committee of individuals who have been chosen for their experience in hemophilia advocacy and/or government policy. All attempts have been made to create a committee whose members are diverse in areas of expertise and regional representation. Committee members may not have any conflict of interest that might interfere or cast doubts on their selection of eligible grantees. Conflicts of interest include, but are not limited to, employment by a manufacturer or distributor of clotting factors.

** The PACT Foundation retains the right to publish, or otherwise share the text of funded proposals and progress reports with other state hemophilia chapters and organizations. This material is viewed as a tool intended to encourage similar advocacy activity.

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