Corporate Relations Policy

Corporate Relations Policy

The International Foundation for CDKL5 Research (IFCR) will enter corporate relationships for the sole purpose of providing mission-related benefits to its constituents and the CDKL5 community.  The IFCR will not accept any corporate donation or enter any corporate relationship that would create a conflict of interest, or even its appearance, with the IFCR’s mission, sound science, or board-approved policies.  All procedures and formal agreements with corporate donors will be designed to prevent any undue influence upon the IFCR.

The IFCR will perform appropriate and adequate due diligence, with respect to all corporate donors, to ensure that the company’s activities, affiliations and business practices do not compromise the IFCR’s mission.

In all relations with external organizations, the International Foundation for CDKL5 Research will act in ways that will only enhance the credibility and professional recognition of the IFCR. IFCR strives to avoid reliance on any particular source of funding, the loss of which could jeopardize the sustainability of programs and services. To ensure that all corporate donations are in alignment with the IFCR’s mission and are always for the sole benefit of the CDKL5 community, the IFCR’s Board of Directors has approved the following guidelines and principles in regard to corporate support.

Types of Corporate Support

  • Financial and/or in-kind support in the form of grants and/or sponsorships for educational and communications vehicles (i.e., conferences, videos, podcasts, publications and community initiatives).
  • Financial and/or in-kind support in the form of grants and/or sponsorships for fundraising purposes.
  • Strategic alliances that provide improved services for constituents.
  • Cause-related marketing.
  • Health message promotion.
  • Financial grants and/or professional support for clinical trials and research.

Vested Corporate Interactions to Avoid

  • A vested corporation is one that either makes or offers products/services used by an individual with CDKL5 Disorder  .
  • IFCR will not endorse any other corporation’s product, service or program.
  • IFCR will not lend its name to license products, services or programs of other organizations.
  • IFCR will not recognize or certify the quality or standards of a particular company, including its products and services.
  • IFCR’s name and logo should not be associated with a specific branded product of an external company.  References to the IFCR website, phone number and address for the purposes of referral information are an exception to the above.

General Principles

  • IFCR will not endorse any corporation or product nor will it allow a corporation’s interest to factor into its decision-making process.  All unrestricted educational grants received by the IFCR will acknowledge and recognize the contributing corporate donor, not the company’s product (i.e. specific drug).
  • In exchange for contributions, the IFCR will allow standard recognition to include, but not be limited to, items such as signage and acknowledgment in IFCR publications.  Additional types of recognition will be considered on a case by case basis, based on the type of funding or opportunity presented.
  • IFCR will not accept grants that may adversely affect its nonprofit status.
  • Revenue generated through corporations will be used to advance the mission of the IFCR in accordance with the strategic plan.
  • The IFCR will maintain complete control of the development and implementation of all content and materials related to educational conferences and materials and all research and clinical trials conducted by the IFCR.
  • Corporations providing sponsorships for advocacy and research conferences or symposia will not influence conference content or selection of speakers.
  • IFCR will maintain control and discretion over all corporate funds received and will ensure compliance with related grant agreements.

As a matter of policy, the IFCR does not disclose its constituent mailing list for external use, nor is the list rented, lent, or shared to benefit constituents. Programs or services that may be of benefit to our patient community may be shared with constituents, upon the discretion of the Executive Director and/or Board of Directors, in emails and/or newsletters that are distributed by IFCR to our constituent mailing list.

Members of the IFCR Board of Directors and staff, as well as their immediate family, may not own shares of, or otherwise hold a direct financial interest in, any company whose primary focus relates to the diagnosis or treatment of CDKL5 Deficiency. They are permitted to own stock in larger pharmaceutical companies that serve both CDKL5 and broader disease communities.

Adopted January 2020