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QCCA
Annual Conference 2022

Thank you to the speakers and attendees of the 2022 QCCA Annual Conference

On October 26, thousands of attendees came together online to hear 25 patient advocates and clinical research professionals share their stories and discuss needed improvements in clinical research.

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Watch Patient Forum Episodes

The videos below are individual episodes of the Patient Forum. Click on the thumbnails to watch any or all episodes.

Mentor Minority Students for Careers in Medicine and Research

A Family’s Quick Journey from Breast Cancer Diagnosis to Decision Making and Treatment

2022 WCG Patient Forum Collage

Greeting from Steve Smith, WCG Patient Advocacy

Men Standing Up To Cancer Together

Supporting Children When Parents Live with Cancer Diagnosis

Reaching Underserved Communities To Counter Cancer’s Severe Impact

Putting a Clinical Trials Research Site in an Underserved Community

A Program of Support for Families and Caregivers of People Living with Cancer

Being the First Patient Dosed in a Life-Saving, Ground-Breaking Pediatric Clinical Trial

Mother of Two Children with Complex Rare Disease Starts Pharmaceutical Company to Create a Treatment

Father of Two Boys with Rare Neurological Disease in Pediatric Clinical Trials

A Patient Advocate Puts Stigma Aside to Ask Clinician About Epilepsy

Optimism and Inclusion in Alzheimer’s Clinical Trials

Technology for More Inclusive Clinical Trials

From Patient to Clinical Trial Participant

Art and Advocacy to Rise Above Isolation of Diagnosis

Cystic Fibrosis Patient Advocate and Artist to Advocate Award Winner

Speaking of Technology To Ease Patient Burden, Be Inclusive, and Modernize Clinical Research

WCG’s Chief Product Officer, Rahul Bafna is Speaking of Technology to Ease Patient Burden, Be Inclusive, and Modernize Clinical Research.

Fibromuscular Dysplasia Society of America: Collaboration Between Patients, Researchers, and Physicians Saves Lives

Collaboration between patients, researchers, and physicians saves lives. An interview with Pam Mace, Patient, Executive Director and Co-founder of the Fibromuscular Dysplasia Society of America.

Preparing the Next Generation of Minority Students for Careers in Clinical Research and Medicine

Dr. Reynold Verret is the president of Xavier University of Louisiana, one of the Historical Black Colleges and Universities. He speaks here about mentoring and educating the next generation of health care and clinical research professionals from minority communities. Xavier University has a long history of transforming the lives of those from underserved communities to prepare them to make major contributions to society through leadership in a variety of professions.

The All of Us Research Program

A Beacon of Hope and Support for Young Women of Color with Breast Cancer

Quantifying the Economic Burden of Rare Diseases on Families and Health Care Systems

Four studies quantify the economic burden of rare diseases. The results show a way forward to saving families and society in excess of $1 trillion.

Three Minute Opening and Overview of the Fall 2020 WCG Patient Forum

Six Minute Opening and Overview of the Fall 2021 WCG Patient Forum

Sickle Cell Disease Association of America Empowers Research and Better Health Care

The Sickle Cell Patient Experience

Reaching the African American Patient and Mentoring the Next Generation of Black Medical Students

New Medical Student Kennedy Johnson Share Her Inspiration and Vision for Minority Health Equity and Inclusion

The Black Women of WCG on the Role of Mentoring Young Minorities to Pursue Careers in Healthcare and Clinical Research

The Role of Trust, Culture Competence and Generous Sharing of Time to Provide Better Healthcare to Vulnerable Underserved Patients

Providing advanced clinical care with an impact in an economically challenged, ethnic and medically underserved community using language, culture and science

The Collaboration of a Researcher With Breakthrough Science and a Patient In Need of Life Saving Medicine That Might Result

Parents and Physician Collaborate to Build Patient Advocacy Group From The Ground Up

Family Concerns and Stress About Going Back Into Public During the Pandemic

The Working Parents of WCG is an Employee Resource Group that meets to discuss topics of interest to working parents. This discussion regards our desire as parents to do the best for our children by giving them opportunities while protecting them from the risks of the pandemic. Striking this balance can be stressful as disagreement about safety procedures exists within communities and families. This adds to a long period of stress already experienced as children have been at home with working parents. Now, back-to-school season brings new stress for many. Coping strategies discussed here include acknowleging ones own stress and reaching out for support from others. Employee Assistance Programs offer professional counseling for some. When questions about pandemic-related safety arise, the group recommends asking for guidance from medical professionals qualified to give scientific, fact-based advice.

Patient Advocacy Leadership at Its Finest. The Global Liver Institute Rallies Stakeholders to Face Down Liver Disease for Many.

Donna Cryer, JD, is the Founder and CEO of the Global Liver Institute, a patient advocacy group with a substantial reach and impact in the fight against liver disease. She speaks of the broad spectrum of stakeholders and topics that are the focus of the Global Liver Institute. These topic include policy reform, equity, clinical research, transplantation access, minority community inclusion, establishing trust, and patient engagement. Her institute works to educate and motivate people to care for their own health, and to strive for a fulfilling and normal life. The Global Liver Institute’s approach is a model of collaboration. They show, by example, the benefits of working with other disease groups, scientists, regulators, policy makers, and community members.

The Sickle Cell Disease Association of America Empowers Research and Better Health Care

Beverley Francis-Gibson is the President and Chief Executive Officer of the Sickle Cell Disease Association of America (SCDAA), a 49-year-old organization that advocates for people affected by sickle cell conditions. She tells of facilitating discussions between people living with sickle cell disease and pharmaceutical companies to plan clinical trials that are more likely to enroll and retain minority community members. She also talks about education for health care providers and patient communities to strengthen their collaboration. She explains how her organization helps democratize access to clinical trial information using iConnect, an online search tool that lets anyone find and connect with clinical trials near home.

Using Data to Bring Change for Minority Health – An interview with Dr. Gary Puckrein, President and CEO of the National Minority Quality Forum

Dr. Gary Puckrein, President and CEO of the National Minority Quality Forum, a not-for-profit, non-partisan organization dedicated to ensuring that high-risk racial and ethnic populations receive optimal health care. His organization assembles and presents data essential to policy makers as they work to plan a more equitable distribution of health care and the benefits of clinical trials. Dr. Puckrein talks of health disparities, how far we have come and the challenges we face today as well as a vision for the future. Dr. Puckrein, has a PhD in American Colonial History from Brown University, and has lectured and taught at Roger Williams College, Brown University, Connecticut College, and Rutgers University where he was a tenured faculty member. He has been a visiting fellow at the Smithsonian National Museum of American History, and a visiting professor at Princeton University. He was publisher of American Visions, the country’s leading African American art and culture magazine. Dr. Puckrein also created and launched Minority Health Today, which serves the needs of clinicians practicing in minority communities.

Cell and Gene Therapy Clinical Trials and Patients at a New Frontier in Drug Development

This panel discussion on Cell and Gene Therapy has something for all stakeholders in clinical research. It provides an introduction to and education about clinical trials in this emerging area of drug development. Moderator Steve Smith is a patient advocate whose son and granddaughter have been diagnosed with unrelated rare disorders. He explains how genetic testing and biotech innovation has advanced since the time his son was diagnosed to benefit his granddaughter who was diagnosed very soon after birth. Dominique Pichard, MD, is the Chief Science officer of the International Rett Syndrome Foundation and mother of a daughter with Rett Syndrome. She addresses the importance of recent innovations, the availability of clinical trials as an option for Rett Syndrome families, and the approach her advocacy group uses to educate patients about clinical research options. Daniel Kavanaugh, PhD, an expert on safety and ethics in clinical research, defines cell and gene therapy, and describes how safety and ethics are addressed by oversight from independent biosafety review committees, independent data monitoring committees, and institutional or independent review boards. Karmen Trzupek, MS, CGC, is the Director, of Clinical Trial Services, and the Director, of Rare Disease Genetics Services for InformedDNA, a clinical genetic counseling practice. She works with clinical trial sponsors, sites, and patients to match patients with the appropriate therapeutic approach and educate all stakeholders about appropriate uses and interpretations of new genetic testing options.

N-Lorem Founder Discusses Advancements in Genome Sequencing, Newborn Screening, Regulatory Approaches, and Collaboration with Patients

Stanley Crooke, MD, PhD, talks about his non-profit, which brings the benefits of modern biotechnology to patients with serious, ultra-rare disorders. His pioneering research has led to first-time treatments for patients that at one time had no hope. Dr. Crooke founded the non-profit N-Lorem organization to transform the landscape for rare disease clinical research and address the substantial challenges faced when developing cures for rare genetic diseases. He is also the founder, former CEO, and board member of Ionis Pharmaceuticals, as well as the founder, current CEO, and chairman of the board of non-profit, N-Lorem Foundation. N-Lorem helps identify patients who can benefit from antisense oligonucleotide technology, matches them to a suitable therapy, and finds the appropriate principal investigator to plan and run an N-of-1 trial. N-Lorem also facilitates investigator and FDA collaboration to establish an approved investigator-initiated IND, and it funds treatment. This interview addresses advancements in genome sequencing, newborn screening, regulatory approaches, science, and collaboration with patients —all of which contribute to a more promising drug development landscape.

Increasing Capacity to be More Inclusive and Reduce the Negative Impact on Health of Stigma, Discrimination and Mistrust

Tim Vincent helps organizations increase their capacity to be more inclusive and reduce the negative impact on health of stigma, discrimination, and mistrust. He speaks of his experience training health care providers to use cultural humility and other culturally competent communication strategies when interacting with HIV and COVID patients, members of the LGBTQ+ communities, ethnic minority community members, the homeless, and others. Vincent describes his work with the National Institutes of Health; Alameda County, California; and the advocacy group he co-founded to make his community strong, engaged, and supportive.

Married Couple Face Down Rare Disease Together

Married couple Sarah and Troy Tompkins are a formidable pair when it comes to dealing with her serious rare disease – whether at home, in the hospital, in the public eye, or on Capitol Hill. Sarah’s Ehlers-Danlos Syndrome is front and center in their lives each day and night, but the Tompkins adapt and press on with their lives, work, and advocacy. Sarah’s connective tissue disorder causes chronic pain and injury, requires infusions and surgeries, necessitates use of a wheelchair, and demands other adaptations. Living with her unseen and often misunderstood disorder, Sarah focuses her advocacy on awareness for all rare disease patients. Through her Ms. Wheelchair Pacific Coast USA 2021 role, she gives women with disabilities a voice.

Speaking out: Stigma, caregiver stress and serious disease.

Speaking out: Stigma, caregiver stress, and serious disease. Learn about this couple’s harrowing journey, life-saving action, and use of their voices to help others. Daniel Garza and Christian Ramirez faced their diagnosis of HPV and anal cancer head-on, and stood up to discrimination and stigma, to bring about a better outcome.

Mental Health Services for an Underserved LatinX Community

Arturo Carrillo, who has a PhD in social work and is a Licensed Clinical Social Worker, talks about his research into mental health disparities in Chicago’s underserved Latinx neighborhoods, and his findings regarding access barriers to care. He pinpoints opportunities to address mental health disparities, and explains how the community-run Brighton Park Community Council delivers mental health services to schools in that neighborhood.

Rare Disease Economic Burden Study and the Impact on Families and Society

Marissa Penrod, a patient advocate Mom, and Annie Kennedy, Chief of Policy and Advocacy for the EveryLife Foundation for Rare Diseases, talk about the recently released Rare Disease Economic Burden Study that quantifies the economic impact rare diseases have on families and society. Marissa takes us into the homes and the lives of families living with a devastating rare disease. Both of these patient community leaders explain how this new data will help policymakers and other decision-makers reduce the impact of the tragic public health crisis of untreated rare disease.

Sue Peschin, President and CEO of Alliance for Aging Research, speaks about priorities in research, legislation, and awareness to benefit families living with age-related illness.

Providing Mental Health Services in Underserved Asian Communities

Melissa Wee, Licensed Clinical Professional Counselor, from the Midwest Asian Health Association, speaks of providing mental health services to underserved Asian immigrant population thanks to a grant from the City of Chicago.

Mental Illness: Patient Advocate Wenora Johnson speaks of her family and coping with mental illness in minority communities.

My Family, My Community, My Cancer, and COVID

Meet Lori Abrams, WCG's Executive Director of Patient Advocacy & Diversity

One Year Anniversary of the WCG Patient Radio Podcast

Diagnostic Odyssey: Persistent Patients Drive Better Outcomes

Site Perspective: Access Issues Cause Health Disparities

Diversifying Parkinson's Trials

Sickle Cell Disease: Rare Disease Minority Patients Face Access Challenges

Sponsor Perspective: Diversify Your Clinical Trials Like This!

Diversify Your Clinical Trials Like This! Preparing Communities, Physicians, Families

Mentor Minority Students for Careers in Medicine and Research

Black Health Matters: Transforming Minority Community Health

Performing Arts: Theater for An At-Risk Community

Clinical Trials and Underserved Community Health Centers

Build Trust with Language, Culture, and Commitment

Build a Trial-Savvy Patient Population That Finds and Understands Clinical Trials

Patient Collaboration and Community Health Centers in Lung Cancer Research

Access Challenges: Patients Connecting To Clinical Trials

Alzheimer's Disease: A Patient Speaks

Alzheimer's Stories – A Choral Performance that Educates

Alzheimers Stories - Complete Performance

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Beginners

Advanced

Reformer

QCCA Annual Conference 2022

Thank you to the speakers and attendees of the 2022 QCCA Annual Conference

Watch Patient Forum Episodes

A Family’s Quick Journey from Breast Cancer Diagnosis to Decision Making and Treatment

2022 WCG Patient Forum Collage

Greeting from Steve Smith, WCG Patient Advocacy

Men Standing Up To Cancer Together

Supporting Children When Parents Live with Cancer Diagnosis

Reaching Underserved Communities To Counter Cancer’s Severe Impact

Putting a Clinical Trials Research Site in an Underserved Community

A Program of Support for Families and Caregivers of People Living with Cancer

Being the First Patient Dosed in a Life-Saving, Ground-Breaking Pediatric Clinical Trial

Mother of Two Children with Complex Rare Disease Starts Pharmaceutical Company to Create a Treatment

Father of Two Boys with Rare Neurological Disease in Pediatric Clinical Trials

A Patient Advocate Puts Stigma Aside to Ask Clinician About Epilepsy

Optimism and Inclusion in Alzheimer’s Clinical Trials

Technology for More Inclusive Clinical Trials

From Patient to Clinical Trial Participant

Art and Advocacy to Rise Above Isolation of Diagnosis

Cystic Fibrosis Patient Advocate and Artist to Advocate Award Winner

Speaking of Technology To Ease Patient Burden, Be Inclusive, and Modernize Clinical Research

WCG’s Chief Product Officer, Rahul Bafna is Speaking of Technology to Ease Patient Burden, Be Inclusive, and Modernize Clinical Research.

Fibromuscular Dysplasia Society of America: Collaboration Between Patients, Researchers, and Physicians Saves Lives

Collaboration between patients, researchers, and physicians saves lives. An interview with Pam Mace, Patient, Executive Director and Co-founder of the Fibromuscular Dysplasia Society of America.

Preparing the Next Generation of Minority Students for Careers in Clinical Research and Medicine

The All of Us Research Program

A Beacon of Hope and Support for Young Women of Color with Breast Cancer

Quantifying the Economic Burden of Rare Diseases on Families and Health Care Systems

Four studies quantify the economic burden of rare diseases. The results show a way forward to saving families and society in excess of $1 trillion.

Three Minute Opening and Overview of the Fall 2020 WCG Patient Forum

Six Minute Opening and Overview of the Fall 2021 WCG Patient Forum

Sickle Cell Disease Association of America Empowers Research and Better Health Care

The Sickle Cell Patient Experience

Reaching the African American Patient and Mentoring the Next Generation of Black Medical Students

New Medical Student Kennedy Johnson Share Her Inspiration and Vision for Minority Health Equity and Inclusion

The Black Women of WCG on the Role of Mentoring Young Minorities to Pursue Careers in Healthcare and Clinical Research

The Role of Trust, Culture Competence and Generous Sharing of Time to Provide Better Healthcare to Vulnerable Underserved Patients

Providing advanced clinical care with an impact in an economically challenged, ethnic and medically underserved community using language, culture and science

The Collaboration of a Researcher With Breakthrough Science and a Patient In Need of Life Saving Medicine That Might Result

Parents and Physician Collaborate to Build Patient Advocacy Group From The Ground Up

Family Concerns and Stress About Going Back Into Public During the Pandemic

Patient Advocacy Leadership at Its Finest. The Global Liver Institute Rallies Stakeholders to Face Down Liver Disease for Many.

The Sickle Cell Disease Association of America Empowers Research and Better Health Care

Using Data to Bring Change for Minority Health – An interview with Dr. Gary Puckrein, President and CEO of the National Minority Quality Forum

Cell and Gene Therapy Clinical Trials and Patients at a New Frontier in Drug Development

N-Lorem Founder Discusses Advancements in Genome Sequencing, Newborn Screening, Regulatory Approaches, and Collaboration with Patients

Increasing Capacity to be More Inclusive and Reduce the Negative Impact on Health of Stigma, Discrimination and Mistrust

Married Couple Face Down Rare Disease Together

Speaking out: Stigma, caregiver stress and serious disease.

Mental Health Services for an Underserved LatinX Community

Rare Disease Economic Burden Study and the Impact on Families and Society

Sue Peschin, President and CEO of Alliance for Aging Research, speaks about priorities in research, legislation, and awareness to benefit families living with age-related illness.

Providing Mental Health Services in Underserved Asian Communities

Melissa Wee, Licensed Clinical Professional Counselor, from the Midwest Asian Health Association, speaks of providing mental health services to underserved Asian immigrant population thanks to a grant from the City of Chicago.

Mental Illness: Patient Advocate Wenora Johnson speaks of her family and coping with mental illness in minority communities.

My Family, My Community, My Cancer, and COVID

Meet Lori Abrams, WCG's Executive Director of Patient Advocacy & Diversity

One Year Anniversary of the WCG Patient Radio Podcast

Diagnostic Odyssey: Persistent Patients Drive Better Outcomes

Site Perspective: Access Issues Cause Health Disparities

Diversifying Parkinson's Trials

Sickle Cell Disease: Rare Disease Minority Patients Face Access Challenges

Sponsor Perspective: Diversify Your Clinical Trials Like This!

Diversify Your Clinical Trials Like This! Preparing Communities, Physicians, Families

Mentor Minority Students for Careers in Medicine and Research

Black Health Matters: Transforming Minority Community Health

Performing Arts: Theater for An At-Risk Community

Clinical Trials and Underserved Community Health Centers

Build Trust with Language, Culture, and Commitment

Build a Trial-Savvy Patient Population That Finds and Understands Clinical Trials

Patient Collaboration and Community Health Centers in Lung Cancer Research

Access Challenges: Patients Connecting To Clinical Trials

Alzheimer's Disease: A Patient Speaks

Alzheimer's Stories – A Choral Performance that Educates

Alzheimers Stories - Complete Performance

Recent QCCA Patient Radio Podcasts

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QCCA
Annual Conference 2022