DEVELOPING A RESOURCE KIT:

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• DEVELOPING A RESOURCE KIT
• How to Manage Your Patient Association
• Presented by
• Joe Isaacs, CAE
• iCSi Annual Meeting
• June 18, 2005
• Copenhagen, Denmark

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Key Areas Identified at iCSi
WorkshopBerlin, GermanyJune 2004
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Organizational Structure

• Legal Aspects
• Constitution/Statutes
• Board role, size and composition
• Chair/President role
• Patient subgroups/interest sections
• Dealing sensitively with pregnancy success
• (The issue of babies at certain meetings)
• Committee Composition and Management
• Dealing with difficult/destructive people

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Daily Life

• Banking
• Fund Raising
• Meeting Room Rental
• Cultural Concerns (Diversity Issues)
• Volunteer Assignments and Management
• Prioritizing among multiple interests/opportunitie
  s
• Dealing with incompetence among volunteers/staff

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Key Areas Raised with iCSi Members in E-mail
Survey of Best Practices and Challenges June
2005
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Best Practices Challenges

• Organizational Bylaws
• Policies Procedures
• Legal, Insurance and Contractual Aspects
• Volunteer Recruitment, Orientation, Retention,
  Management, Recognition, and Support
• Membership Development, Categories and Dues
  Structure
• Governance Structure and Oversight
• Board Staff Relations
• Strategic Planning and Implementation

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Best Practices Challenges (contd)

• Budgeting and Finance
• Fund Raising and Revenue Diversification
• Human Resource Management
• Technology and Website Management
• Chapter/Support Group Relations
• Corporate Relations
• Peer and Professional Counseling Services
• Meeting and Conferences

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Best Practices Challenges (contd)

• Educational Programs
• Outreach and Assistance Programs
• Public and Media Relations
• Government Relations/Public Policy Advocacy
• Partnerships and Coalitions
• Publications Magazine, Newsletter, Brochures
• Research Support Statistical, Medical, Health
  Services, Public Opinion, etc.
• International Relations

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Results of Input from iCSi Members June 2005
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Incorporation/Bylaws

• RESOLVE (USA)
• Yes, in accordance with nonprofit laws Initiated
  in 1974
• IAAC (CANADA)
• Yes, in accordance with nonprofit laws Initiated
  in 1983
• JOYCE (UGANDA)
• Yes, in accordance with nonprofit laws Initiated
  in 2001
• FINE (JAPAN)
• Yes, in accordance with nonprofit laws Initiated
  in 2004

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Governance Structure Policy-Making Body

• RESOLVE (USA)
• 23 Member Board with 5 Standing Committees
• IAAC (CANADA)
• 13 Member Board with 3 Standing Committees
• JOYCE (UGANDA)
• 6 Member Board (no committees discussed)
• FINE (JAPAN)
• Board (size, committees not provided)

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Mission Statement

• RESOLVE (USA)
• Yes
• IAAC (CANADA)
• Yes
• JOYCE (UGANDA)
• Yes
• FINE (JAPAN)
• Yes

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Membership

• RESOLVE (USA)
• Consumer (55/Year) and Professional (150/Year)
  and Free Registrants
• Total 32,000
• IAAC (CANADA)
• Consumer (40/Year)
• Total 125

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Membership

• JOYCE (UGANDA)
• 3 Categories Founding (Life) Members General -
  Subscription Members and Honorary (Appointed)
  Members
• Total 750
• FINE (JAPAN)
• Four Categories Website (15/Year) Bulletin
  (14/year) Yell Free Membership and Support
  Membership (46 or more)
• Total 400

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Chief Staff Officer

• RESOLVE (USA)
• President CEO
• IAAC (CANADA)
• Executive Director
• JOYCE (UGANDA)
• Administrator
• FINE (JAPAN)
• Chairman

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Annual Independent Financial Audit

• RESOLVE (USA)
• Yes
• IAAC (CANADA)
• Yes
• JOYCE (UGANDA)
• Yes
• FINE (JAPAN)
• Yes

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More Specific Policies Procedures

• RESOLVE (USA)
• Yes in the Financial, Liability, Personnel,
  Chapter, Corporate Relations and Program areas
  need updating and expansion
• IAAC (CANADA)
• Limited beyond Bylaws still dealing with the
  basics with limited staff

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More Specific Policies Procedures

• JOYCE (UGANDA)
• Limited beyond Bylaws Seeking to learn more
  about practices of other iCSi members
• FINE (JAPAN)
• Limited beyond Bylaws Seeking to learn more
  about practices of other iCSi members

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Volunteer Recruitment Retention

• RESOLVE (USA)
• A continual challenge, but varies by state
• Total Hundreds for National and 40 Chapter
  Boards
• IAAC (CANADA)
• A major challenge
• Total 25 Chapter Leaders for 25 peer-led
  support groups across the country

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Volunteer Recruitment Retention

• JOYCE (UGANDA)
• Draw from Academia those with Reproductive Health
  Training No Chapters
• Total Not provided
• FINE (JAPAN)
• A major challenge No Chapters
• Total Not provided

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Staffing

• RESOLVE (USA)
• 8 FTEs
• Departments Development, Chapter and
  Constituent Relations, Government Relations,
  Finance, Membership and Communications
• IAAC (CANADA)
• Executive Director with Part-time Administrative
  Support

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Staffing

• JOYCE (UGANDA)
• Number not cited, but administrator oversees
  these departments Membership, International
  Relations, Gender, Research and Statistics
  Media Awareness
• FINE (JAPAN)
• Number Not provided

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Strategic Planning

• RESOLVE (USA)
• Board undertakes and approves 3-year plan with
  staff input
• IAAC (CANADA)
• Board approves annual Work Plan prepared by
  Executive Director
• JOYCE (UGANDA)
• Not Discussed
• FINE (JAPAN)
• Not Discussed

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Budgeting Finance

• RESOLVE (USA)
• Annual Work Plan process guided by Strategic Plan
• Budget 1.7 million (not including chapters)
• IAAC (CANADA)
• Annual Approve Work Plan and Budget
• Budget 200,000
• JOYCE (UGANDA)
• Not Discussed
• FINE (JAPAN)
• Not Discussed

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Primary Revenue Streams

• RESOLVE (USA)
• Membership Dues, Advertising, Private Donations,
  Corporate Sponsorships, Foundations and
  Governmental Grants
• IAAC (CANADA)
• Membership Dues and Private Donations
• Working on getting more movers and shakers on
  the Board and begun corporate outreach

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Primary Revenue Streams

• JOYCE (UGANDA)
• Membership Dues, Foundation Stipend and Private
  Sector Donations
• FINE (JAPAN)
• Membership Dues and Donations

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Programs Services

• RESOLVE (USA)
• Advocacy, Public/Media Awareness, Support Groups,
  Website, Online information, Chats/Bulletin
  Boards, Research, Local Education, Helpline, and
  Quarterly Chapter Newsletters/Magazines
• IAAC (CANADA)
• Bilingual Website, Magazine and Support Line
• Some Advocacy by Executive Director relative to
  legislation and regulation

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Programs Services

• JOYCE (UGANDA)
• Public/Media Awareness, Annual Exhibition,
  Infertility Open Week, Membership Meeting,
  Scientific Conference, Counseling, Quarterly
  Newsletter and Research
• FINE (JAPAN)
• Website Information Resource, Mental Support,
  Peer-to-Peer Contact, Public Awareness,
  Education, Bridge between Patients, Clinics and
  the Public

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Greatest Operational Challenges Cited

• Resource Development Money! Money! Money! Fund
  raising and reaching into the mainstream for
  support of programs and capacity building
• Volunteer Recruitment and Retention Changing
  demographics and virtual connectivity detracting
  from drawing volunteers
• Membership Development A revolving door Once
  pregnant infertile patients dont continue their
  engagement challenge of converting them to
  donors

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Greatest Operational Challenges Cited

• Public Awareness and Outreach Educating and
  supporting more people earlier in the care
  continuum
• Advocacy Changing the perspective of
  policymakers and care providers to make fertility
  treatment and adoption more accessible and
  affordable Infertility options treated as
  medically necessary not as a luxury

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Fund Raising Zeroing in on Individual Donors

• Developing Your Donor Base Profile
• Create a roster of potential donors
• L Linkage
• A Ability
• I Interest
• Information gathering to further develop the
  donor profile
• Tailor your fund raising solicitation

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Fund Raising Making the Case to Individual
Donors

• Developing a Case Statement
• Identifies and validates the need
• Documents the need
• Identifies programs and strategies designed to
  address the needs
• Establish the competence of the organization and
  its staff and volunteers
• Explain who will benefit

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Fund Raising Making the Case to Individual
Donors

• Developing a Case Statement
• Identify the resources required to fund the
  programs
• Explain why the prospect should donate
• Tell the prospective donor how to give
• Respond to the prospects unasked questions

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Fund Raising Vehicles for Individual Donors

• Direct Mail
• Telemarketing
• Online Fund Raising
• Individual Solicitation
• Special Events
• Corporate Sponsors
• Retail Merchandise Sales

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Some Overarching Roles and Rules

• Board must carefully select a cadre of volunteers
• Chief staff ensures key components are in place
• It takes money to make money
• Thank Everyone
• Communication is key
• Keep donor confidentiality
• Legal counsel review
• Avoid Conflicts of Interest

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• Thank you so much for your attention and best
  wishes for every success in your fundraising
  efforts.
• Joe Isaacs