Impacting Open Arrangement for Intentional Wellbeing Offices .

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Affecting Public Policy for Voluntary Health Agencies – NORD Perspective Diane E. Dorman Vice President for Public Policy

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When you hear foot beats, don\'t expect it\'s a steed. It could very well be a zebra Medical School Adage

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Advocacy Is… Being p olitical with a little "p" Influencing administrative elements Raising mindfulness Being an educator Sharing qualities

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It Also Means "To Lobby"… Standing up for what you think Solving issues Taking a position Changing open observation Influencing open approach Enforcing open arrangement

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But What About the Big, Bad IRS?…

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IRC Section 501(c)(3)… An association may not : 1. Take part in carrying on purposeful publicity 2. Endeavor to impact enactment as a generous piece of its exercises .

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However,… IRC 501(c)(3) open foundations are allowed to campaign the length of they don\'t give "a generous part" of their exercises to endeavoring to impact enactment

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You can… Lobby on particular administrative issues, yet not for particular applicants

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You Can Make A Difference… Working together, the whole uncommon ailments group can have any kind of effect You can change laws Advocacy is a vote based custom Advocacy discovers genuine arrangements

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Policymakers require your skill Lobbying people groups Views of philanthropies are imperative Lobbying propels your cause and manufactures open trust

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Getting Organized for Advocacy…

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Organize Internal Decision-Making… Designate a council devoted to settle on choices about open strategy Allocate staff to take a shot at open approach every week

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Develop Public Policy Goals… Prioritize – Identify issues influencing your main goal and objectives Pick your fights – screen out inconsequential or minimal issues Stay centered

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Be straightforward Ask yourself what\'s in question What information and ability do you have to get the message over?

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Prepare Staff and Volunteers… Designate no less than one staff individual to take a shot at open strategy issues Budget stores for effort and open arrangement Identify, select and prepare volunteers to bolster promotion and campaigning issues

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Be a Team Builder…

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Identify Stakeholders… Patient gatherings Consumer associations Individuals Legislators Decision-producers

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Accept individuals for who they are Be interested in new, now and again intense, approaches Challenge dug in, systematized power, without being threatening

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Believe in individuals\' ability to carry out the occupation and finish Respect others perspectives Don\'t customize contradictions

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Allies some of the time differ Don\'t cut off ties Express forceful feelings in ways that reinforce

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Have a comical inclination – giggling IS the best drug Have the stamina to take part in the ordinarily l o n g battle to accomplish – and keep up – noteworthy change Be interested in advancement

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Make It Personal… Describe how the enactment sways you When you get an answer, study the contention and negate legitimately, if relevant

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Your own letter, composed on your stationery, sends a solid message: "I am a constituent. I vote. The issue is vital to my family and me"

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Communicate! Impart!

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I Don\'t Know the Name of My Representative or Senators… U.S. Congress: U.S. Place of Representatives: Senate:

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Write A Letter… When composing a letter or email to your U.S. agents, remember the accompanying dependable guidelines: Stick to 1 subject Be brief Be true Include the bill number and title (i.e. S. 1217/HR 2869, Ending the Medicare Disability Waiting Period Act of 2005

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Senate The Honorable (congressperson\'s full name) United States Senate Washington, DC 20510 Dear Senator: (senator\'s last name) House The Honorable (agent\'s full name) U. S. Place of Representatives Washington, DC 20515 Dear Representative: (agent\'s last name)

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What About E-sends?… When tending to an email to an individual from Congress, the body of your message ought to utilize the accompanying organization: Your name Address City, State, Zip Code Dear (title) (last name): Start your message here...

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Ask for Action…

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Other Valuable Resources… Don\'t know their telephone numbers? Call the U.S. State house Switchboard at (202) 224-3121 - all the data you ever expected to think about political commitments - Learn how your delegate or representatives voted on an issue, and much, substantially more

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Welcome to My World…

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Senate Committees… Appropriations Labor, Health and Human Services, Education Subcommittee Jurisdiction – NIH allocations Arlen Specter (R-PA), Chair Tom Harkin (D-IA), Ranking Member

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Appropriations Agriculture, Rural Development and Related Agencies Subcommittee Jurisdiction – FDA allotments Robert Bennett (R-UT), Chair Herb Kohl (D-WI), Ranking Member

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Health, Education, Labor and Pensions Committee (HELP) Jurisdiction – NIH non-assignment issues Michael Enzi (R-WY), Chair Edward Kennedy (D-MA), Ranking Member

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Finance Committee Jurisdiction – Health programs under Social Security and wellbeing programs financed by a particular expense or trust reserve, Social Security Charles Grassley (R-IA), Chair Max Baucus (D-MT), Ranking Member

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House Committees… Appropriations Labor, Health and Human Services, Education Subcommittee Jurisdiction – NIH apportionments Ralph Regula (R-OH), Chair David Obey, (D-WI), Ranking Member

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Appropriations Agriculture, Rural Development, FDA and Related Agencies Subcommittee Jurisdiction – FDA appointments Henry Bonilla (R-TX), Chair Rosa DeLauro (D-CT), Ranking Member

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Energy and Commerce Health Subcommittee Jurisdiction – biomedical innovative work and other non-allotments issues Nathan Deal (R-GA), Chair Sherrod Brown (D-OH), Ranking Member

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Ways and Means Committee Jurisdiction – Revenue Measure, Social Security Programs including Medicare Bill Thomas (R-CA), Chair Charlie Rangel (D-NY), Ranking Member

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Ways and Means Health Subcommittee Jurisdiction – Programs for giving installments to medicinal services, wellbeing conveyance frameworks or wellbeing research, health care coverage premiums, human services costs Nancy Johnson (R-CT), Chair Pete Stark (D-CA), Ranking Member

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The Power of the Many…

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August 3, 2001 - Introduction of the Rare Diseases Act – Senators Orrin Hatch (R-UT) and Edward Kennedy (D-MA) March 28, 2002 – Introduction of the Rare Diseases Act – John Shimkus (R-IL) March 28, 2002 – Introduction of the Rare Diseases Orphan Product Development Act – Mark Foley (D-FL)

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November 6, 2002 – President Bush signs both the Rare Diseases Act (PL 107-280), and the Rare Diseases Orphan Product Development Act into law (PL 107-281)

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April 10, 2003, House Resolution 147 presented in the House by Mark Foley Commemorating the 20 th Anniversary of the Orphan Drug Act and the National Organization for Rare Disorders May 19, 2003, Resolution went by a vote of 386 Yeas and 48 Nays

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July 20, 2003 – Introduction of the Medicare Patient Access to Drugs for Rare Diseases Act of 2003 , HR 2700, Christopher Cox (R-CA)

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November 3, 2003 – The National Institutes of Health declares the foundation of the Rare Diseases Clinical Research Network $51 million in stipend subsidizing more than 5 years 10 Rare Diseases Consortiums Data and Technology Coordinating Center Trans-NIH Working Group on Rare Diseases

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Collaborative Education & Test Translation Program (CETT) Based on NORD dialect incorporated into the U.S. Congressional House Appropriations Committee to address the advancement of analytic tests for uncommon infections ORD built up the CETT Program for Rare Genetic Diseases Pilot system to advance new hereditary test improvement Better comprehension of each uncommon ailment

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Purpose of CETT… With contribution from the Trans-NIH Rare Diseases Research Working Group, Federal organizations, proficient affiliations, understanding promotion gatherings, and others, the CETT Program will Develop models to encourage the interpretation of hereditary tests from examination labs to clinical practice

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Summary… Making a Difference for the Entire Rare Disease Community

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People Can Change Laws... Be an educator Find genuine arrangements Advance your cause Build open trust

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It\'s Your Civic Duty… Promote Political Change Legislators need to get re-chose and they give careful consideration to your perspectives and suppositions

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The Power of the One… a definitive power of the U.S. Congress to act lives in YOU – not in institutions 

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Contact Information Diane E. Dorman, Vice President, Public Policy National Organization for Rare Disorders (NORD) 1050 17 th Street, NW, Suite 600 Washington, DC 20036 Phone/(202) 496-1296; Cell/(202) 258-6457

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