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CPALs In-Person/Virtual  
MEETINGS & WEBINARS

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July 10, 2024 (In Person)

PALs United for Veterans' Health + Rare Disease Congressional Hill Briefing
Washington, DC
Since 2021, CPALs has been convening and dialoguing with Veteran advocates, rare disease advocates, and subject matter experts to better understand the needs of Veterans with rare diseases, comorbid illnesses and the associated social drivers of health facing those affected by rare disease and their caregivers. A culmination of our work is captured in Improving Care for Veterans with Rare Diseases: A Blueprint for Action (Blueprint) developed through the PALs United for Veterans’ Health initiative, a multi-year, collaborative effort of CPALs. This Hill Briefing, sponsored by Rep. Mariannette Miller-Meeks, M.D. (IA-01), will address issues surfaced in the Blueprint.  
 

June 10, 2024 (In Person-Virtual)

Calling All Advocates!  Let’s Change the Course of Meningitis Prevention in the US

CPALs and the American Society for Meningitis Prevention (ASMP) are jointly hosting this webinar that features various perspectives on meningitis prevention, highlighting patient stories, medical insights, policy perspectives and resources to empower advocacy and action. REGISTER HERE

June 4, 2024 (In Person)

Tardive Dyskinesia Grant Networking Session at NAMICon
Denver, CO

This session will be held at NAMICon 2024 in Denver. The goal is to provide a forum for individuals/organizations involved with the TD Grant program, run by NAMI National, for networking and best practice sharing. The program, in its 4th year, this year involves 80 NAMI State Organizations and Affiliates who are committed to creating awareness and educational opportunities for TD Awareness Week (May 5-12) and throughout the year. 

March 4, 2024 (In Person-Virtual)

2024 Tardive Dyskinesia (TD) Grant Orientation Webinar 

This webinar represented a collaborative effort between the National Alliance on Mental Illness (NAMI), CPALs and Neurocrine Biosciences to continue to raise awareness and further advocacy efforts across the country around Tardive Dyskinesia (TD). ​ The TD Grant program, run by NAMI National, involves 80 NAMI State Organizations and Affiliates working to create awareness and educational opportunities for TD Awareness Week (May 5-11, 2024) and throughout the year. This webinar featured training along with insights and peer-to-peer best practice sharing provided by CPALs and NAMI leaders. We were thrilled to also unveil our “CPALs TD Champions” program to support our collective and growing TD advocacy efforts by connecting experienced leaders with new grantees to transfer best practices in TD education. This continues to build on the work started by CPALs in 2021 with the launch of PALs United for Movement Disorders.

 

September 21, 2023 (In Person-Virtual)

Promoting TD Education Throughout the Year and Throughout the Community 

This event built on previous CPALs events that were designed to best educate the community about Tardive Dyskinesia (TD). The webinar will highlight experiences and best practices from NAMI organizations, and how to put the TDAW Toolkit into action to maximize awareness and education efforts throughout the year. There was a special focus on outreach to different segments of the community and how to address TD in non-traditional, underserved and communities of color in a culturally sensitive way.

June 7, 2023 (In Person-Virtual)

Advancing Patient Engagement in the Medical Device/MedTech Industry: Working Together to Amplify the Voice of the Patient (Webinar)

This webinar was designed to encourage patient advocacy leaders to broaden their investment in patient engagement processes for product development across all industries and sectors, including the Medical Device/MedTech industry. Attendees were introduced to the Playbook that identifies patient engagement opportunities throughout the MedTech developmental cycle and which helps promote partnerships between patient advocates and Medical Device/MedTech device developers to improve patient adherence and product utilization.  The goal was to improve understanding of patient engagement and the roles which patient advocacy leaders, and their organizations, can play in the MedTech device research and development cycle to help improve patient health outcomes. The use and effectiveness of patient stories was showcased in the webinar. 

May 26, 2023 (In Person)

Tardive Dyskinesia Grant Networking Session at NAMICon
Minneapolis, MN

This session was held in person at NAMICon 2023 in Minneapolis. The goal was to provide a forum for individuals/organizations involved with the TD Grant program, run by NAMI National, for networking and best practice sharing. The program, in its 3rd year, this year involves 80 NAMI State Organizations and Affiliates who worked to create awareness and educational opportunities for TD Awareness Week (May 1-7) and throughout the year. The Networking Session at NAMICon featured best practices sharing from NAMI representatives Leslie Stoyer (NAMI Summit County) Merenstein (NAMI CO) and Matt Shapiro (NAMI New York State) along with many other audience members who were able to also highlight their work and experiences related to TD awareness and education. There was great turnout with over 50 people in attendance. 

March 22, 2023 (In Person-Virtual)

Tardive Dyskinesia Grant Orientation Webinar

This webinar represented a collaborative effort between the National Alliance on Mental Illness (NAMI), CPALs and Neurocrine Biosciences to continue to raise awareness and further advocacy efforts across the country around Tardive Dyskinesia (TD). The TD Grant program, run by NAMI National, involves 80 NAMI State Organizations and Affiliates working to create awareness and educational opportunities for TD Awareness Week (May 1-7) and throughout the year. This continues to build on the work started by CPALs in 2021 with the launch of PALs United for Movement Disorders.

December 8, 202(In Person-Virtual)

PALs United for Veterans' Health Roundtable: Collaborating on Issues Affecting Veterans with Rare Disease to Maximize Collective Impact

This invitation-only leaders Roundtable built on the work started at the PALs United for Veterans' Health Roundtable inaugural event that was held November 16, 2021, where the Center for Patient Advocacy Leaders (CPALs) convened veterans' advocates and health leaders to collaborate on ways to improve access to care for U.S. Veterans affected by rare diseases/conditions. This convening was designed as a working meeting, to further examine the recommendations from the previous meeting collectively and develop a plan of action (PALs United for Veterans' Health Blueprint for Action) on how this group can work together to initiate and execute on ways to promote education on the issues and improve access to care for Veterans with rare diseases/conditions.

September 13, 2022 (In Person-Virtual)

PALs United for Movement Disorders: Trends & Issues in Telehealth - Advocating for a Balanced, Patient-Centered Approach

Event Site 

This was the 3rd PALs United for Movement Disorders event, which followed events in October 2021 and May 2022. (See Resources-PALs United for Movement Disorders). This webinar brought together advocates from movement disorder and mental health organizations (and others) to engage with experts and fellow advocates to address to dialogue around important clinical, financial, regulatory, privacy, quality, and health equity issues relating to telehealth, and how to better collaborate moving forward through educational and advocacy initiatives.

June 29, 2022 (In Person-Virtual)

Patient Engagement Think Tank Meeting #4 - Goals & Opportunities for Patient Engagement in the US MedTech Industry: Focus on Commercialization Phase

Fourth meeting of Patient Engagement Think Tank involving Med Tech industry representatives, with patient advocacy/patient engagement perspective provided by CPALs, led by Patient Engagement team at Alira Health, with support from MassMEDIC.

June 28, 2022 (Webinar)

Meningitis in Florida: An Emerging Public Threat and What You Can Do About It 

Florida is currently experiencing an unprecedented Meningococcal Disease Outbreak. In response to this outbreak, CPALs and The AIDS Institute partnered with the Meningitis B Action Project to develop this webinar.  The webinar was designed to educate attendees about bacterial meningitis, its serious potential impact on campuses and communities, policy changes and advocacy efforts needed to make an impact, and what can be done to prevent future outbreaks.  More information can be found here:  https://www.taicfcp.org/MeningitisInFlorida#

May 12, 2022 (In Person-Virtual)

PALs United for Movement Disorders: Showcasing TD Awareness Week Activities to Ignite a Movement
Event Site 

This event built on the work started by CPALs last year with the launch of PALs United for Movement Disorders. Our inaugural PALs United for Movement Disorders web event was held October 26, 2021. Objectives for this follow-up event were to: 

  • Showcase educational and awareness activities conducted during TD Awareness Week.

  • Highlight best practices from TD Awareness Week to improve understanding of how to more effectively address TD/Movement Disorders.

  • Continue to unite and strengthen the network of TD advocates to raise awareness and address issues impacting the well-being of persons and caregivers affected by TD.  

March 30, 2022 (In Person-Virtual)

Patient Engagement Think Tank Meeting #3 - Goals & Opportunities for Patient Engagement in the US MedTech Industry: Focus on Regulatory & Market Access Phases 

Third meeting of Patient Engagement Think Tank involving Med Tech industry representatives, with patient advocacy/patient engagement perspective provided by CPALs, led by Patient Engagement team at Alira Health, with support from MassMEDIC.

January 26, 2022 (In Person-Virtual)

Patient Engagement Think Tank Meeting #2 - Goals & Opportunities for Patient Engagement in the US MedTech Industry: Focus on Clinical Development

Second meeting of Patient Engagement Think Tank involving Med Tech industry representatives, with patient advocacy/patient engagement perspective provided by CPALs, led by Patient Engagement team at Alira Health, with support from MassMEDIC.

December 17, 2021 (In Person-Virtual)

PALs United for Obesity Advocate Advisor Meeting

This was a convening of Advocate Advisors who have direct experience with advocacy/policy related obesity and co-morbid conditions to help CPALs chart out the work we are doing around obesity, through our PALs United for Obesity initiative. The framework for this work can be found here: PALs United for Obesity: Opportunities for Education and Advocacy.

November 16, 2021 (In Person-Virtual)

PALs United for Veterans' Health Roundtable 

Moving from Ideas to Action Special Report

Proceedings Report

Event Site

Invitation-only leaders roundtable focused on addressing issues affecting Veterans with rare disease/conditions, with the following goals:

  • Coalesce advocates and supporters from veteran service organizations, rare disease patient health advocacy groups and caregivers, to identify ways of working together to meet the access, diagnostic and treatment challenges specific to rare disease within the VA system. 

  • Connect the group of advocates so they can use a collective voice to address access to care for Veterans affected by rare disease/conditions in the VA system, through education, policy and/or procedural change.

October 26, 2021 (In Person-Virtual)

PALs United for Movement Disorders

Proceedings Report

Event Site 

This event convened a select group of over 45 health advocacy and policy leaders to coalesce around common goals to raise the profile of movement disorders, like tardive dyskinesia (TD), and advance patient-centered solutions. The event broadly addressed the well-being of persons affected with movement disorders through a combination of presentations from key thought leaders and interactive discussions among event participants. Key objectives of the event included:

  • Raise awareness and improve understanding of involuntary movement disorders, including TD, in the population of those affected by chronic conditions;

  • Explore the current educational and awareness work being conducted by patient advocates;

  • Connect and unite participants to: identify potential policy and advocacy strategies and tactics that address movement disorders; engage and mobilize other stakeholders; collaborate to ensure policies are inclusive, patient-centered, and can lead to improved health outcomes for those affected by these conditions; and raise awareness about and address issues focused on the well-being of their caregivers.

September 29, 2021 (In Person-Virtual)

Patient Engagement Think Tank

Inaugural meeting of Patient Engagement Think Tank involving Med Tech industry representatives, with patient advocacy/patient engagement perspective provided by CPALs, led by Patient Engagement team at Alira Health, with support from MassMEDIC.

October 30, 2020 

Empowering PALs: Patient Copay Assistance and the Fight to Protect Access to Affordable Healthcare (Webinar) 

A national webinar featuring policy experts and patient advocates from across the country designed to explore important issues related to patient copay assistance and access to care. Panelists covered a variety of topics including private health insurance open enrollment, trends in health plan benefit designs, and a health insurance policy that impacts patient copay assistance and healthcare affordability. The discussion provided education and information on the current status of ever-changing federal policies, and highlighted advocacy efforts and opportunities in which advocates can get involved. 

View slides

September 25, 2020

2020 World Lung Day

For the 3rd consecutive year PALs United for Lung Health joined many others as World Lung Day 2020 Partners, alongside the Forum of International Respiratory Societies (FIRS), to advocate for respiratory health globally. #WorldLungDay is an opportunity for organizations and individuals from around the world to join this campaign, to shine a spotlight on the alarming statistics, and to hold their own lung health events. This year’s specific focus was for more research to prevent, detect and treat respiratory infections.

April 29, 2020

National Briefing with CDC: COVID-19 and the Chronic Disease Community (Webinar)

Held in partnership with Chronic Care Policy Alliance, Allergy & Asthma Network, Global Healthy Living Foundation. A virtual briefing with the U.S. Centers for Disease Control and Prevention, John Hopkins Medicine, UC Davis Health and organizations representing the chronic disease community on COVID-19.  Designed to educate health advocates and others about why the COVID-19 virus can put people with chronic conditions/diseases at higher risk for complications and what advocates/caregivers/family members can do to protect those most vulnerable to the virus. Over 2000 participants were involved.

View Recorded Webinar

January 20, 2020

CPALs Advocate Advisor Strategic Planning Meeting

Washington, DC
Strategic, program and resource planning for 2020 with CPALs Advocate Advisors from across the country. 

November 21, 2019

National Patient Advocacy Leaders (PALs) Roundtable:  Addressing the Well-Being of Older Adults with Chronic Diseases and Complex Healthcare Needs

Washington, DC

Invitation-only gathering of approximately 40 executive level national advocacy leaders in an interactive roundtable setting with national policy leaders, moderated by Susan Dentzer.

Objectives:

  • Review the current healthcare landscape as it relates to older adults with chronic diseases and complex healthcare needs to identify areas of mutual interest and the potential for organizing a broad array of health advocacy organizations for collective impact.

  • Explore the issues that impact the long-term well-being of older adults with chronic diseases and complex healthcare needs, the healthcare and social service delivery systems and the growing burden of complex health conditions on patients, caregivers and providers.

  • Identify opportunities for engagement and collaboration of health advocacy leaders in order to advance the voice of the patient & family in policy that promotes integrated, patient-centered solutions that can improve coverage, promote quality and empower patients, caregivers and advocates in the older adult community.

October 11, 2019

Patient Advocacy Leaders United (PALs United) Florida

Tallahassee, FL

CPALs partnered with the Chronic Care Coalition/Chronic Care Policy Alliance to collaborate with Florida health advocates and delve into local policy issues, exploring ways to work together to further advocacy efforts and enhance patient engagement for better patient outcomes.  

September 25, 2019

2019 World Lung Day

For the 2nd year in a row on #WorldLungDay, PALs United for Lung Health joined many others as World Lung Day 2019 Partners, alongside the Forum of International Respiratory Societies (FIRS), to advocate for respiratory health globally.  World Lung Day is an opportunity for us all to unite and advocate for better lung health globally. Organizations and individuals from around the world have joined the campaign, to shine a spotlight on the alarming statistics, and to hold their own lung health events.

September 5-8, 2019

US Conference on AIDS

Washington, DC

CPALs and The AIDS Institute engaged with key stakeholders for three and ½ days to discuss timely policy issues, share best practices and network. The USCA is in its 23rd year and is the largest HIV-related gathering in the US. It convened more than 3,000 attendees who were focused on the theme “Ending the Epidemic In Their Memory.” 

July 10-12, 2019

PALS as a Best Practice at 2019 National Sexual Health Conference

Chicago, IL

CPALs provided skill building to conference attendees through a session entitled "PALS as a Best Practice - Cultivating Advocates:  Building Collaborations and Leveraging Resources."

For information about events prior to 2019, please contact Anne Easter @ AEaster@taimail.org. 

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