National Organization for Rare Disorders (NORD), Danbury, CT
Executive Director Position Profile, December 2007

ABOUT THE ORGANIZATION

Mission Statement
The National Organization for Rare Disorders (NORD), a 501(c) 3 organization, is a federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

What is A Rare Disorder?
A rare or "orphan" disease affects fewer than 200,000 people in the United States. There are more than 6,000 rare disorders that, taken together, affect approximately 25 million Americans.

 
Our Sources of Funding
As a non-profit, voluntary health agency devoted to advocating for and serving rare-disease patients and their families, NORD currently relies on contributions, membership fees, and revenues from our products and services. Most of the money donated to NORD goes directly to programs and services, with only three cents of every dollar donated to NORD in 2006 used for fundraising and administration. NORD currently has a $15 million dollar budget and 46 staff.

 
Our origin (Founded in 1983)
NORD was established in 1983 by rare disease support groups, patients and families who worked together to get the Orphan Drug Act passed. This law provides financial incentives to encourage development of new treatments for rare diseases, and initiatives to facilitate their regulatory review.

 
NORD Services and Programs
NORD provides a range of information services concerning rare diseases, through the Rare Disease Database, books, referral to voluntary health organizations representing specific diseases through NORD’s organization database, newsletters on health policy issues, annual meetings featuring government, industry and scientific speakers; and the NORD Corporate Council, which facilitates interaction between industry, the government, and the patient community. NORD leads advocacy efforts on behalf of the rare disease community; administers funds donated for grant support of research on specific rare diseases that have no organizational home; assists voluntary health organization members to develop their capacity to serve their members; and conducts Medication Assistance Programs (MAP) that enable needy patients to obtain medications or co-pay assistance that they otherwise could not afford. NORD is also called upon by manufacturers and patient organizations to troubleshoot on problems concerning further development, regulatory review, or supply of orphan products.

MEMBERSHIP CATEGORIES:

NORD has several membership categories. These include:

Basic Individual Membership ($30)
• Three free reports from NORD’s Rare Disease
  Database during membership year
• The opportunity to participate in NORD's Networking
  Program
• Reduced registration fee for NORD's Annual
  Conference
• Opportunity to become actively involved in NORD's
  Volunteers in Public Policy Program
• Annual subscription to the Orphan Disease Update
  newsletter

“Friend” Individual Membership ($50) - Offers the same benefits as basic membership, except it provides five free reports from NORD’s Rare Disease Database during membership year.
“Contributing” Individual Membership ($100) - Offers the same benefits as basic membership, except it provides ten free reports from NORD’s Rare Disease Database during membership year.
Professional Colleague ($75)
This category is available for healthcare professionals, social workers, nurses, educators, and librarians. It is designed to assist professionals who are providing information and referrals to the rare disease community. As a Professional Colleague, one receives:

• Six free disease reports available during the
  membership year
• 10% discount on the NORD Resource Guide
• Reduced registration fee for NORD's Annual
  Conference
• Annual subscription to the Orphan Disease Update
  newsletter

Organizational Membership

NORD is a federation of 136 voluntary health member organizations committed to improving the health and lives of people with rare “orphan” diseases. NORD has demonstrated that these organizations speak with a louder voice when they work together, even though they each serve their own rare disease constituencies.

 
NORD member organizations benefit from representation in Washington, DC, through NORD’s Vice President for Public Policy in its Washington office. NORD also facilitates opportunities for patients and professionals, such as physicians, nurses and genetic counselors from health organizations to participate directly in policy deliberations. NORD also provides member organizations with scientific and policy updates.

The Executive Director Position

The Executive Director (ED) reports to the Board of Directors, who formally assesses and monitors the ED’s performance and sets the ED’s salary. The ED oversees all staff functions including: Membership Programs and Services, Government Relations & Public Policy, Research, Communication, Fundraising, Conferences, Administration, and Information Technology.

A successful candidate for this position will be a visionary leader experienced in managing and leading change and committed to improving the lives of people with rare diseases. The candidate needs to have strong negotiation skills to deal with the sometimes disparate interests of various stakeholders. In addition to demonstrating excellent written and verbal communication skills, the ideal candidate will have experience in serving as a spokesperson for a non-profit organization. NORD seeks a candidate who understands the opportunities and challenges presented by rare diseases and by developing more effective means to diagnose, treat, and prevent them.

Additionally, the candidate needs to have skills in building consensus among diverse constituencies, strategic planning, networking, building alliances and developing partnerships. The desirable candidate will understand health care and medical research issues and have experience in enhancing the visibility of an organization. Experience working with NIH (including the ORD, office of the director, and the NIH institutes), other agencies within HHS, FDA, CDC, major medical institutions, pharmaceutical, biotech and generic companies, national voluntary healthcare organizations, and health policy groups is highly desirable.

Education, Experience, and Essential Skills and Abilities

The qualified candidate will have a Bachelor’s degree (Master’s degree or PhD preferred) and 6 to 10 plus years’ experience in association/ non-profit or for-profit management. Experience serving as an Executive Director is preferred. The optimal candidate will also have a demonstrable record of success in program development and fundraising.

 
Personal Characteristics of the Executive Director

• A strong leader who is committed to doing what is
  best for patients and families with rare diseases.
• A person with a fresh, new outlook who is
  knowledgeable about issues of rare diseases and
  healthcare in general.
• An articulate communicator with the ability to work with
  all levels of society –and with those who share or
  oppose their views. Good with the media, and in
   explaining difficult issues in simple language.
• A leader who can interact positively with members of
  Congress, NIH, FDA, researchers, industry, and patient
  advocacy groups.
• A person who is approachable and invites interactions
  with member organizations, and can build consensus
  among them on major issues.
• A person with a strong desire and vision to grow the
  organization, and take it in new directions that
  capitalize on political and scientific opportunities.
• A sense of humor with flexibility to manage change.
• Good business and management skills, and ability to
  identify new product and service opportunities. Good
  front-person for raising funds
  and guiding fund-raising efforts.
• Ability to identify, attract, and maintain good staff,
  mentor and guide staff development.
• A Seasoned manager who is experienced in working
  with a board, and comfortable with the distinction
  between management and governance.
• A diplomatic advocate with strong interpersonal
  communication skills and an ability to bring together
  diverse perspectives and interests.

NORD’s Accomplishments to Build Upon

The combination of qualities, experiences, and values that help define an organization’s culture are embodied by its leader. NORD is a highly respected and dedicated advocate for the rare disease community. It is a powerful voice for patients and families with rare diseases. While NORD strives to continuously adapt to and bring about advances, it has a multitude of accomplishments of which to be proud. Among those programs, services, initiatives, and products receiving high marks from NORD leaders, members and staff are the following:

• Information services including educational materials
  and website database.
• Providing information and guidance on rare disorders
  to people who are personally affected.
• Patient assistance programs which meet specific
  needs of the rare disease community including
  medication assistance programs (MAP).
• Public Policy and Government and Industry Relations
  including including advocating on behalf of patient
  needs and securing government support from
  Congress to meet those needs; maintaining a steady
  presence for rare diseases on Capitol Hill and in the
  media.
• Fostering partnerships with pharmaceutical companies
  around orphan drug development.
• Administering a research program for rare disease
  research.

New Opportunities

Yet there are numerous opportunities for a new ED to build on NORD’s accomplishments by developing new programs and services to take it to the next level, and bring qualities that will continue to shape the organization’s culture going forward. Among the qualities cited by stakeholders as foundations of the organization’s culture are a caring, efficient, visionary organization that is committed to the cause of treating rare disorders, well connected, courageous and patient-centered. Among the opportunities cited by stakeholders are new efforts to craft a strategic plan for the organization’s future, to create a new vision based on medical and technological advances, and to forge an organizational culture that epitomizes the new leader’s values and style.

Measures of Success

What the successful candidate and the Board of Directors ultimately agree on in terms of measures of success is an important matter to be determined and negotiated among the parties. What some stakeholders consider important benchmarks for the Executive Director and organization to achieve over the first year, include:

• Developing a vision, strategic plan and financing
  approaches for ensuring NORD’s continued growth and
  stability.
• Managing and coaching staff, and enhancing
  professional development and a service-oriented
  culture.
• Advancing NORD’s visibility and its public policy
  positions and strategies.
• Building upon the success of the Washington office by
  continuing to develop relationships with Congress and
  the Executive branch to influence policies.
• Maintaining and expanding NORD’s relationships with
  government, pharmaceutical and other industries,
  other organizations serving patients, and the patient
  community.
• Expanding membership, bringing diverse groups
  together with active participation from them.
• Maintaining NORD’s current programs, while
  expanding and developing new programs, including
  those that bridge genomics and patient needs.
• Continuing to reach out to member organizations and
  other stakeholders, and expanding to include
  additional services member organizations’ request.
• Demonstrating a working knowledge of rare disorders
  and the problems faced by rare disease patients.
• Promoting fundraising and fiscal growth.

NORD’s Future Opportunities

External Opportunities:
Legislation on health care reform, advances in orphan drug research and development, communications technology and fundraising will bring new challenges and new opportunities to NORD. Among those programs, services, initiatives, and products identified by NORD stakeholders as important to focus on in the future are to:

• Increase NORD’s reputation as a provider of MAP
  programs and similar programs that directly serve
  patients in need, and patients’ needs.
• Serve as an active spokesperson and advocate for
  patients to the pharmaceutical and insurance
  industries and to healthcare provider organizations.
• Seek additional opportunities to utilize the research
  grants program, and the expertise of the Medical
  Advisory Committee.
• Continue to advocate on behalf of patients with rare
  diseases, drawing the attention of legislative and
  executive branches to NORD’s members’ issues, and
  continue to work with Executive branch agencies, such
  as FDA and NIH, to facilitate research and
  development of diagnostic and treatment advances.
• Stimulate increasing public awareness of rare diseases
  and issues affecting patients and their families, within
  a rapidly changing environment.
• Continue to pursue new avenues for supporting and
  encouraging companies to develop and market new
  drugs, biologics, diagnostics, and devices for rare
  diseases.

Internal Opportunities:
The selection of a new Executive Director will create many opportunities to develop new links with member organizations and industry companies, shape NORD’s internal structure, and reinforce existing programs and create new ones. As it moves from a founder-focused organization, NORD will need to reassess its mission within a rapidly evolving environment to take advantage of new opportunities. Stakeholders have identified several internal management characteristics they deem desirable as the organization moves into the future:

• Engagement in tapping experience and skill sets
  staff, Medical Advisory Committee members,
  Corporate Council members, constituents of NORD’s
  MAP program, and other stakeholders to develop, with
  Board members, a vision and strategy for the future.
• Active listening skills and communications practices
  that foster understanding and collaboration.
• Adeptness in facilitating on-going dialogue among
  member organizations to determine how to respond to
  their needs in the future and how they, as a network,
  can help one another.
• Ability to increase mentorship opportunities and
  networking among member organizations.
• Devotion to helping smaller community organizations
  build their capacity.
• Creativity in regularly updating the website for
  communication, education, and development
  purposes, and technological savvy in adapting
  evolving technologies to reach out to NORD’s many
  audiences and constituents in new ways.
• Committed to promoting active Board membership,
  participation, and support.
• Able to understand and explain rare disease issues,
  and to develop a consensus among member
  organizations on key health care issues to present a
  unified approach to lawmakers and to the public; and
  ability to maintain NORD’s adeptness in responding to
  the press.
• Ability to sustain and continue to build NORD’s high
  visibility in Washington.

Summary

NORD is transitioning from a founder-based agency, and is poised to develop a vision for moving forward that takes advantage of new opportunities to improve the lives of people with rare diseases. This transition is both a challenge and an exciting opportunity. NORD is highly respected in the greater healthcare and medical communities. Increased exposure in the media, Congress and federal agencies over the years has enhanced NORD’s reputation, and provides an important foundation for building on efforts to promote widespread and strategic awareness of contemporary and future issues concerning the prevention, diagnosis, treatment, and functioning of people with rare diseases.

The optimal ED candidate will be a patient advocate and visionary leader who is committed to NORD’s mission, has solid management experience, and is creative in developing new products and services that benefit people with rare diseases and those who care for them. Key characteristics for the executive are to be knowledgeable, open-minded, creative, objective, an excellent listener who is committed to encouraging interaction and earning the trust of various stakeholders, and interested in building strategic new partnerships with other organizations and professional societies. To become fully engaged with NORD’s mission, knowledge of orphan diseases is strongly preferred. It would be quite helpful for the candidate to have a working understanding of rare disorders and the problems patients face as a result. Using well-developed communication and consensus-building skills, the new Executive Director will lead efforts to position the organization internally and externally for the next decade and beyond.



Search by Pamela Kaul and James Zaniello, Association Strategies Inc., 1111 North Fairfax Street, Alexandria, VA 22314. Telephone: (703) 683-0580. Email: jim@assnstrategies.com