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Membership Benefits


Benefits of the Corporate Council

Membership on the Council reflects a commitment to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research and service.

The Council also provides unique opportunities for companies to engage with the rare disease community, not only with the patient advocacy organizations that constitute NORD’s members, but also with top scientific, clinical, and policy experts and leaders in the worldwide rare disease community.

The NORD Corporate Council has three special areas of focus.  They are:

  • Policy and Regulation
  • Patient Access and Reimbursement
  • Research and Intelligence

NORD sponsors periodic meetings and teleconferences with Corporate Product Members and Corporate Research Members of the Council to discuss these topics.  This interaction enables these Council members not only to keep up with the latest developments but also to participate in discussions with leading experts in these areas and, if appropriate, to help shape NORD positions and policies.

Among the additional benefits of Corporate Product Membership and Corporate Research Membership in the NORD Corporate Council are:

  • Council meetings twice a year with opportunities to interact with leaders on national and international health policy issues, legislative and regulatory initiatives, advancements in biomedical research, treatment innovation, commercialization of orphan products, changes in standards of care and best practices, and secular trends affecting the care of people with rare diseases.
  • The opportunity to engage directly with NORD in the formulation of legislative and regulatory policies, through regularly-scheduled teleconferences and meetings with NORD’s senior staff as well as decision-makers within the rare disease community.
  • The opportunity to engage with NORD and with other members of the rare disease community in coordinated strategies to pursue specific objectives such as seeking to advance or introduce legislation or regulatory policies.
  • The opportunity to consult with NORD senior staff on specific issues or challenges that the member company has with the development, marketing, distribution, post marketing surveillance, or reimbursement of the company’s products.
  • Introduction and access to NORD's Scientific and Medical Advisory Committee, Board of Directors, National and Associate Member Organizations, and senior staff, as well as key policymakers, government officials, and industry experts.
  • Discounted fees for other programs and services NORD offers such as the administration of patient assistance programs, assistance with recruitment for clinical trials and trial announcements in NORD's publications.
  • Patient support and educational programs such as Disease Specific Regional
    Workshops/meetings, RareConnect™ online community moderation, and the RareLaunch™ patient organization development and mentoring program.
  • Opportunities to interact with a variety of different payer organizations and decision makers
  • Timely news alerts highlighting important issues impacting rare diseases and orphan drugs, biologics and devices.
  • Networking opportunities with other companies and health-related industries.
  • Special recognition in NORD public outreach including the NORD newsletter, website, and Council materials.

Companies that are essential partners to Corporate Product and Corporate Research members through marketing strategies, access programming, and distribution networks and protocols may become Corporate Health Care Business Members of the NORD Corporate Council. These companies include specialty pharmacies, specialty distributors, management and communications consultants, contract research organizations, and integrated health care systems.  Corporate Health Care Business Members receive periodic reports from NORD and attend the NORD Corporate Council’s two annual meetings. NORD works with these members to discern particular interests they have based on their company objectives that can be served by Council membership.

The NORD Corporate Council has three levels of membership with different financial commitments. Following are the membership levels:

Corporate Product Member

  • Companies that currently market one or more orphan drugs or devices
  • Annual Contribution: $25,000

Corporate Research Member

  • Companies that currently are not marketing but are developing an orphan drug or device
  • Annual Contribution: $10,000

Corporate  Health Care Business Member

  • Companies that are essential partners to Corporate Product and Corporate Research members
  • Annual Contribution: $15,000

For information on the NORD Corporate Council, contact us here.

 
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