Celebrating 10 Years of Improving Lives ME /CFS Fibromyalgia Chronic Lyme MCS / EI Gulf War Illness One Voice, One Community, One Cause™ PANDORA strives.

Slides:

Advertisements

Similar presentations

Introduction to Advocacy: A How-To Guide Sam S. H. Wu, MD MA MPH MBA Council of State Presidents, AAPM&R Good Shepherd Penn Partners Penn Institute for.

Advertisements

Engaging Patients and Other Stakeholders in Clinical Research

RARE ACTION NETWORK ® Presentation by NORD June 16, 2014.

National Coalition for Cancer Survivorship From Patient to Advocate: Your Role in Improving the United States Cancer Care System Kelsey Nepote, MSW Policy.

Building Effective Advocacy for Hepatitis C Hepatitis C Choices in Care.

Raising Your Voice for Children: An Advocacy Training Davida McDonald Director, State Policy NAEYC.

PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE PCORI Board of Governors Meeting Washington, DC September 24, 2012 Sue Sheridan, Acting Director, Patient.

1 Getting Equity Advocacy Results (GEAR) identifying and tracking the essential components of equity advocacy for policy change Knowledge for Equity Conference.

Private and Public Partnerships Developed to Improve Services for Children with Special Health Care Needs (CSHCN) Presentation to 3rd International Conference.

Advocacy and Coalition Building Molly Cole Executive Director FAVOR, Inc. June 29, 2006.

Working Collaboratively Toward Effective Decision-making Frances D. Butterfoss, PhD, MSEd Center for Pediatric Research James M. Krieger, MD, MPH University.

Home By One Program Building Integrated Partnerships with Connecticut Agencies, Parents & Providers Tracey Andrews, R.D.H, B.S., Meghan Maloney, M.P.H.

Tallahassee Childhood Obesity Prevention (COPE) Coalition Logic Model Assumptions The community will be motivated to become agents of change. Obesity is.

Guide to Cancer Survivorship and Resources for Cancer Patients.

Dementia Partnership July 31,   Culture Change  Resident Centered  Resident Director  Relationship Base  Making Nursing Homes Great Places.

Jennifer Phillips May 22, I haven’t worked in the trenches launching or running programs since But the best thing about being a program officer.

Reflecting on 20 Years of Advocacy. The Parent Support Network Is Formed In 1989, both the federal and state government put their money on the table and.

Welcome to the National Child Traumatic Stress Network (NCTSN) Top 10 Strategies for Ensuring a Successful Start November 3, 2008.

European Patients’ Forum Regional Advocacy Seminar Budapest October 2010 Welcome by The Medtronic Foundation.

CONTRIBUTIONS OF THE INFORMAL CAREGIVER 5 December 2000 CHCA 2000 CONFERENCE Faye Porter and Bonnie Schroeder VON Canada 1 Responding to Caregiver Needs.

Milwaukee Consortium for Hmong Health Shannon Sparks, PI Beth R. Peterman, Program Manager Pang Vang, Project Coordinator Mayhoua Moua, Lay Health Educators.

Association of Early Learning Coalitions MARKETING & OUTREACH PLAN.

1 First Things First… Thank you! Thank you!! Thank you!!!

Using Intermediary Organizations to Gain Access to Quality Internships Presented by: Deanna Hanson, California Director, NAF.

The CIT Partnership Law Enforcement: first responder Advocacy: organizations, individuals with a mental illness and their families Mental Health: care.

The Patient-Centered Medical Home & Health 2.0 AHRQ Annual Conference September 15, 2009 Michael S. Barr, MD, MBA, FACP Vice President, Practice Advocacy.

Margo Michaels, MPH Executive Director, ENACCT Co PI, Communities as Partners in Cancer Clinical Trials, R13-HS Panel on Use and Implementation of.

Advocacy Training Know Your Power National Hispanic Prayer Breakfast June 18-20, 2013.

Should we transform folic acid programs into preconception health campaigns? The North Carolina experience Amy Mullenix, MSW, MSPH 3 rd National Preconception.

Module IV: Building Organizational Capacity and Community Support Cheri Hayes Consultant to Nebraska Lifespan Respite Statewide Sustainability Workshop.

Are Women’s Health Concerns Prioritized at the NIH and the FDA? Nicole C. Quon, Ph.D. Assistant Professor Indiana University.

PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE PCORI Board of Governors Meeting Washington, DC September 24, 2012 Anne Beal, MD, MPH, Chief Operating Officer.

11 The CPCRN, DCPC, NCI, and the Community Guide: Areas for Collaboration and Supportive Work Shawna L. Mercer, MSc, PhD Director The Guide to Community.

Forward Action in Mental Health ______________________________ Calgarians’ advocating for the mental health community Hear more of the story at:

Beyond the Walls of the Clinic: The Importance of Collaboration with Community Organizations to Address Viral Hepatitis Dawn Fishbein, MD, MS Scientific.

1 Welcome to 2009 March Board of Governors Meeting! Jane E. Schauer, M.D., Ph.D., F.A.C.C. March 28, 2009 ACC.09, Orlando, FL.

Why Write A Grant? Elaine M. Hylek, MD, MPH Professor of Medicine Associate Director, Education and Training Division BU CTSI Section of General Internal.

AAPM&R Annual Assembly Boston, Massachusetts NIH - Promoting a Robust Pain, Musculoskeletal, and Rehabilitation Research Portfolio Jennifer Zumsteg, M.D.

The Power of Parents: National Consortium on Deaf-Blindness Family Leadership Training Program It all begins today!

Parkinson’s Action Network [Name of Presenter] [Title] [Date]

H ⊕ lger Schünemann, MD, PhD Professor and Chair, Dept. of Clinical Epidemiology & Biostatistics Professor of Medicine Michael Gent Chair in Healthcare.

Parent’s For Children’s Mental Health Organization Orientation.

Achieve OER State Policy Recommendations July 30, 2015 CC BYCC BY Achieve 2015.

9/22 represents: Chronic Myeloid Leukemia & September 22

1 SUBURBAN AGING AND DISABILITY RESOURCE CENTER Jonathan Lavin, AgeOptions John Jansa, Progress Center for Independent Living A Partnership between AgeOptions.

National Prevention Strategy 2011 U.S. Administration on Aging Health and Dementia Grantee Meeting June 13, 2011 Janet Collins, PhD Associate Director.

Creating a New California Department of Public Health: Organizational and Leadership Challenges and Opportunities Mark B Horton, MD, MSPH Director and.

Draft, Washington Prediabetes Advocacy Plan.

Patient Engagement throughout the Biopharmaceutical Lifecycle: Tips for Effective Patient Advocate/Industry Collaboration to Improve Patient Access and.

Group Health’s experience September 24, 2015| Kathryn Ramos Implementing CDSME in an integrated health care system.

CDC’s Investments in Community Initiatives Division of Adult and Community Health National Center for Chronic Disease Prevention and Health Promotion Lynda.

David M. Murray, Ph.D. Associate Director for Prevention Director, Office of Disease Prevention Multilevel Intervention Research Methodology September.

Building Awareness of Teacher Leadership. Why Teacher Leadership?

Ontario Palliative Care Network July Address physical, psychological, social, spiritual and practical issues, and their associated expectations,

The AHRQ Safety Program for Improving Antibiotic Use

Building a subspecialty in child abuse pediatrics to improve care

ADVOCACY Presentation by Baiko Suleman Dass at “DE WATSON LEADERSHIP ACADEMY” Semester training for Union Leaders and Cultural groups Date: Venue:

CDC’s 6|18 Initiative: Accelerating Evidence into Action American College of Preventive Medicine Utilizing the 6|18 Initiative to Address High Blood.

How Can Our Partners Help to Sustain Peer to Peer Efforts?

National Consensus Project:

Telling your story: The POWER of the Patient’s Voice

Myriam Hernandez Jennings

Advocacy in Arizona For Residents and Beyond Joanna Campodonico MD MPH

Maximizing the value and the impact of health research in Europe

Patients voice set to grow

Capacities for Successful Implementation

Meeting with Denver Legislators

Involving Parents in Systems of Care.

Welcome! Thank You! . Welcome! Thank You! Goals for Today’s meeting Introduce CDN Assess needs in the Eastern Shore Region and what CDN can bring.

SARCOMA FOUNDATION OF AMERICA

Presentation transcript:

Celebrating 10 Years of Improving Lives ME /CFS Fibromyalgia Chronic Lyme MCS / EI Gulf War Illness One Voice, One Community, One Cause™ PANDORA strives to alleviate the suffering caused by NEI diseases through advocacy and public, patient and physician education. Thank you to our dedicated board members ! PANDORA partners with organizations, collaborates with academia, the biotech industry & health agencies.

The kick off for the program was at the 2007 PANDORA-sponsored IACFS/ME Conference in Fort Lauderdale, Florida. Our Main Advocacy Project: The Advocates Extraordinaire™ Leadership Program has been successful since It provides advocacy training so patients, caregivers and family members can effectively speak to government leaders, to the media and to the public.

Other PANDORA Projects: Empty Chair Project™ Pediatric Pennies™ I Need a Hero Project™ Quality of Life Project™ NEI Center™ PANDORA Provides Assistance to Other Projects: Speak Up About ME MCWPA Lymenaide Bringing Ryan Home Coalition 4 ME/CFS

PANDORA’s Grants Coastal Construction Forest Laboratories HHV-6 Foundation Purdue Pharma Some of our Micro Grants Given: Nancy Klimas, MD-(UM) Gordon Broderick, PhD Vermont CFIDS Association VA Foundation of So. Fla. National Fibromyalgia Assoc. John K Chia, MD Michael H. Antoni, PhD Fundación para la Fibromialgia y el Síndrome de Fatiga Crónica Some Grants We Have Received: Pro-Health Mark Iverson Silverman, Oren & Mayer families.

PANDORA’s Position on ME/CFS and Government Policy CDC: NCHS-Follow your own policy and announce the director’s decision on the Coalition 4 ME/CFS proposal to have CFS reclassified in the neurological chapter of the ICD-10-CM so it is aligned with the WHO ICD-10. As recommended at C&M ICD9- CM meeting in 2011, this change must be made before the ICD- 10-CM is implemented. CFS Program - Support the Coalition 4 ME/CFS reclassification proposal and work with the ME/CFS scientific and patient advocacy community to change the name of the disease / illness. CFS Program - Continue to make changes in the CDC website as recommended by the CFSAC, researchers and clinicians, as well as the Coalition 4 ME/CFS and other patient advocacy organizations.

PANDORA’s Position on ME/CFS and Government Policy NIH: The now correctly-named ME/CFS Special Emphasis Panel should announce their next meeting date and roster - or say when such announcement will be made. No information has been released since at least June Appropriate a fair share to ME/CFS research funding, as the prevalence, cost and personal impact demands. Raise it from being 220 th out of 232 illnesses in funding. Make ME/CFS a priority. Send a “full court press” message that the NIH wants more ME/CFS researchers to apply for grants. FDA: Meet with stakeholders about fast- tracking the ME/CFS treatment approval process. Social Security: Place severe ME/CFS on the list of compassionate allowances. AHRQ: Educate doctors

Hope, the only Antidote. ™ T H A N K Y O U ! Check out our new website: 10 Years and Counting… Hooray! Our niche and our strength comes from our seeking partnerships and collaborations and providing support to other organizations and individuals who are ready to make a difference. We look forward to continuing to work with you on improving the quality of life of ME/CFS patients.