EVENTS 2025
Speakers 2025
Full speaker profiles are listed on this web page in alphabetical order.
Kwanele Asante
Kwanele Asante is the Former Chairperson of the Ministerial Advisory Committee on Cancer Prevention and Control, Republic South Africa. She serves on the World Health Organisation’s Civil Society Working Group on Non-Communicable Diseases. Kwanele has received several awards for her African cancer equity activism, including the Harvard Global Health Catalyst – 2016 African Ambassador Award. She serves as a community representative on the South African Medical Council’s Bioethics Advisory Panel and she is a former member of the External Advisory Board of the STARS Program at Harvard Medical School, USA.
Asante has a B. A. Liberal Arts (Psychology-Sociology major) degree from Wesleyan University in Middletown, Connecticut, USA. And LLB and MSc Medicine: Bioethics and Health Law degrees from the University of the Witwatersrand, South Africa.
Recommended Resources:
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BMJ article on WHO Social Participation Resolution https://doi.org/10.1136/bmj.q1460 (Published 10 July 2024)
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The right to participate: An under-utilised component of the right to the highest attainable standard health - https://go.shr.lc/3SeIol2
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World leaders unite to embed social participation in health systems - https://www.bmj.com/content/bmj/386/bmj.q1460.full.pdf
- Remuneration of African patient partners is an important tool for health justice - https://doi.org/10.1136/bmj.q2675
Brian Beh
Brian is a stroke survivor, who sustained a stroke in 2016. Since this time, he has been involved in stroke advocacy and clinical research projects, as an investigator and a consumer with lived experience. He shares blogs on social media about various aspects of stroke and stroke rehabilitation. In 2021 he received the Stroke Foundation of Australia’s ‘Improving Life After Stroke’ Award in recognition of his efforts in this area. Brian retired in 2012 after a career spanning 3 decades in corporate communications in the Australian Financial Services Industry. Late in his career he became involved in Organisational/Workplace Cultural Programs, Management Consulting, Project Management and Change Management and would regularly speak at conferences in Australia and abroad. Since having his stroke, he now regularly shares his stroke story with stroke clinicians and students and incorporates his broad corporate experience to share his insights on service delivery.
Dr. Matthew Berryman
Dr. Matthew Berryman is a software engineer from Adelaide (Kaurna Country) with a long career working in and around academia. He had a haemorrhagic stroke in 2022, which initially left him paralysed to the right side of his body and unable to talk. He has since recovered well and is committed to improving the life of other stroke survivors, though his work in software, his volunteer role on the rehabilitation ward where he was a patient, and as part of the Centre for Research Excellence to Accelerate Stroke Trial Innovation and Translation. He also participates in the co-design of stroke research and as a chief investigator in stroke research.
Neil Bertelsen
Neil Bertelsen has spent the past 30 years bringing the patient voice to health care decision makers and communicating the science of health care to patients in a way that truly informs their own personal health choices. Neil is the past chair of ‘Health Technology Assessment International’s (HTAi) Patient and Citizen Involvement Interest Group’, an international group whose remit is to work closely with HTA organizations and patient organizations to bring patient involvement processes and patient insights and experiences into decision making process. Neil is currently on the steering committee of this group. Neil is also a board member of PFMD (Patient Focused Medicines Development), an international consortium of stakeholders working towards more integrated inclusion of the patient voice across the medicine lifecycle. Neil works directly with the patient advocacy community, the industry, and authorities such as HTA agencies to facilitate collaborations and co-creation of approaches to improve patient involvement in healthcare decisions. Neil began his career as a scientist and science journalist before becoming a HIV patient advocate in the 1990s where frustration over the lack of patient involvement led him to collaborate closely with stakeholders to work towards meaningful change.
Maalvika Bhuvansunder
Maalvika Bhuvansunder is a 26-year-old forensic psychologist specializing in suicide prevention in India. In 2016, she was diagnosed with Crohn’s disease. Her personal experience with this illness has motivated her to become an advocate for mental health, particularly regarding its impact on individuals living with chronic conditions.
Currently, she serves as the Mental Health and Peer Support Lead at the IBD Patient Support Foundation in India. Maalvika represented the foundation at the IBD Vizag 2024, which is the 8th National Meeting of the Colitis and Crohn's Foundation of India (CCFI). In 2022, she was a fellow with the Crohn’s and Colitis Young Adult Network and continues to engage with them for patient conferences (Generation Patient) and other advocacy initiatives.
Resources:
- Guide for international students with IBD as a part of the 2022 CCYAN fellowship https://drive.google.com/file/d/1iG-VTyjkJMwfBQWoMhQOv2JI_e4zZD6R/view?usp=sharing
- Speaker at the about IBD Podcast https://open.spotify.com/episode/5S1cB8AtA6lLz9mWTO4ijJ
- Research paper where Nikhil (founder of IBD India) is involved in https://www.sciencedirect.com/science/article/pii/S2949923224000047
- IBD India Newsletter https://img1.wsimg.com/blobby/go/c77177d4-d657-47b6-a2e1-455c5759ea5d/IBD-India-Newsletter-Q1-2025-English-PDF-Compr.pdf
- IBD INDIA was recently featured in the European Federation of Crohn’s and Ulcerative Colitis Association’s (EFCCA). https://efcca.org/sites/default/files/efccamagazine-02-2025-web%20%281%29.pdf
Social Media
Linkedin: https://www.linkedin.com/in/maalvika-bhuvansunder/
Instagram (IBD India Page): @india.ibd
Janelle Bowden, PhD
Janelle Bowden, PhD, is founder of AccessCR, an Australian social enterprise providing services and support to research-engaged organisations around clinical trial operations and consumer engagement and involvement in research. These services fund AccessCR’s activities to support, build capacity in, connect and advocate for the needs of people looking for, taking part in and contributing to medical research and clinical trials, a community we’ve nicknamed the Community and Consumer Research Workforce (or CCReW, pronounced ‘croo’).
Connect with me on LinkedIn https://www.linkedin.com/in/janellebowden/
Learn about the publications I’ve collaborated on: https://orcid.org/0000-0003-3993-5551
Learn more about CCReW: https://ccrew.accesscr.com.au/
Maureen Bult-Mulder
Maureen Bult- Mulder (PhD) is an educational psychologist by training specialized in pediatric rehabilitation medicine. After working in clinical practice she completed her PhD thesis titled ‘Participation in leisure activities of children and adolescents with physical disabilities’(2012). She worked as a post-doc researcher and lecturer at the Vrije Universiteit Amsterdam and the University of Utrecht. After that she started working as a projectmanager for hospitals and patientorganizations combining her passion for science and heart for healthcare innovation. The projects she is working on are always carried out by collaborating with people with lived experience, patientorganizations and healthcare professionals to insure best fit with needs and demands in daily care. In 2023 she developed the tool for Partnership to help researchers collaborate with experts by experience in every step of research and healthcare innovation projects. She is involved in the Family Engagement in Research training in the Netherlands. The training is aimed at both experts by experience and researchers to collaborate in research.
Currently she is also working as an advisor within the department of Neuroscience at the UMC Utrecht. In the advisory role she facilitates partnerships between experts by experience and researchers.
Joan Carlini
Dr Joan Carlini is a pioneering researcher dedicated to transforming healthcare through innovative consumer involvement and co-design. Drawing on both professional expertise and lived experience of chronic illness, Joan works to bridge the gap between theory and practice to ensure research reflects real-world needs.
She was the founding chair of the Gold Coast Health Consumer Advisory Group and continues to advocate for meaningful consumer involvement through roles on health service boards and national research committees. Joan’s recent work explores the structural supports needed to embed consumers meaningfully in research teams.
Marie Ennis-O’Connor
Marie Ennis-O’Connor brings over two decades of patient advocacy experience with a strong focus on the intersection of lived experience, research, and strategic communication.
As Head of Communications for the International Bureau for Epilepsy, she leads global efforts to elevate patient voices in policy and research with a particular emphasis on building capacity among patient advocates to engage meaningfully in research and health system transformation.
A Stanford Medicine X e-Patient Scholar, Marie’s advocacy journey began with a breast cancer diagnosis, which led her to share her experience through Journeying Beyond Breast Cancer – a blog that has since reached over a million readers worldwide.
Marie has contributed to a wide range of international initiatives that bring patients to the heart of health research, not just as participants but as partners. She has served on advisory boards for the Mayo Clinic’s Center for Social Media, The Beryl Institute, and the Patient Empowerment Foundation. Her article on responsible AI leadership in healthcare was recently recognised with the 2025 Healthcare Management Forum Article of the Year award for its contribution to strategic and ethical dialogue in health system transformation.
Marquetta Frost
Josef De Guzman
Josefino "Josef" De Guzman is a globally recognized patient advocate with over 20 years of experience dedicated to psoriasis and chronic illness communities. He founded and leads Psoriasis Philippines (PsorPhil) and PsorAsiaPacific (PsorAsia), unifying patient organizations across the Philippines and the Asia-Pacific region. As Treasurer of the International Federation of Psoriasis Associations (IFPA) and Chairman of the World Psoriasis Day Steering Committee, he manages global financial strategy and spearheads international awareness campaigns. His work amplifies patient voices at forums like the World Health Assembly and drives capacity-building, research, and policy change focused on inclusion, collaboration, and addressing unmet needs. De Guzman has published on patient experience and psoriasis narratives in peer-reviewed medical and healthcare journals. He is an international lecturer and contributed to the WHO Psoriasis Global Report.
Patrícia de Luca, MSc
Master of Science from the School of Physical Education and Sport at the University of São Paulo (EEEF-USP), Bachelor's and Teacher's degree in Physical Education from the same institution. Experience in exercise prescription, research, ethics, health education and advocacy, with an emphasis on cardiovascular diseases, diabetes and obesity. She worked voluntarily at ADJ Diabetes Brasil for more than 10 years.
Co-founder of the Brazilian federation of rare diseases (FEBRARARAS). Co-founder of the Cardiovascular Advocacy Group (GAC). Co-Founder and part of the Organizing Committee of the Intersectoral Forum of CCNTs in Brazil (FórumCCNTs). Former president and current Executive Director of the Brazilian Association of Familial Hypercholesterolemia (AHF).
Member of the Steering Committee of the randomized clinical trial "Effect of Brazilian Cardioprotective Diet adapted and supplemented with phytosterols and/or krill oil in patients with familial hypercholesterolemia: DICA-HF study";
Member of the Research Ethics Committees of the Faculty of Pharmaceutical Sciences of USP and "Hospital do Coração" of Sao Paulo, Brazil, representing research volunteers/community members.
References
Allison FitzGerald, Operations Director, GlobalSkin
Allison FitzGerald is a seasoned leader with 30 years of experience across a variety of industries, including health and fitness, medical education, the environment and technology. She has a Bachelor of Arts, a Bachelor of Science in Human Kinetics, as well as a Project Management Professional (PMP) designation. Allison is passionate about learning and change, and leverages this passion, along with her leadership skills, to guide organizations through change, opportunity, and disruption.
In her role, she leads the organization’s Global Research on the Impact of Dermatological Diseases (GRIDD) project which has produced the novel Patient-Reported Impact of Dermatological Diseases (PRIDD) measure. She is a thought leader in the arena of generating patient experience data and insights using patient-led measures. Allison has close family and friends who live with challenging skin conditions and therefore has unique first-hand experience in supporting skin patients. With her love of discovery and commitment to improving the quality of the human condition, she is an enthusiastic contributor to evolving the patient role across the ecosystem.
Rachel Giles
Rachel was appointed Associate Professor of Internal Medicine at the University Medical Center Utrecht (Netherlands) in 2006. She came from a family with an inherited tumour syndrome and has been active in advocacy for patients with inherited kidney cancer since 2003. She is an internationally recognised genetics, cancer and kidney physiology researcher, with an H-index of 68, and >6 years of experience in Medical Publishing. She has been chair of the Dutch VHL Organisation since 2009 and has been president of VHL Europa since 2023. Rachel led the international kidney cancer coalition (IKCC), representing 1.3 million patients, from 2010-2024. She joined Patvocates.net as Patient Engagement Director in 2025.
Marco Giovannoli
Marco Giovannoli is an aeronautical engineer, author, and global advocate for stroke survivors. In 2022, an ischemic stroke profoundly changed his life, challenging his physical abilities and reshaping his identity. Determined not to be defined by limitations, Marco embraced neurorehabilitation with courage and curiosity, transforming adversity into advocacy.
His memoir, Miracle in the Desert, offers an honest and deeply human account of his journey, touching hearts worldwide and offering hope to survivors and caregivers alike.
Drawing on his technical expertise and lived experience, Marco advocates for innovation in stroke recovery by reimagining how therapies are assessed and delivered. Combining his analytical skills with first-hand insight, he aims to transform both the quantitative and qualitative evaluation of neurorehabilitation therapies.
At the core of Marco’s message is a belief in emotional intelligence, compassion, and the transformative power of vulnerability. His concept of “transcovery”, where transformation meets recovery, invites others to see stroke not as an end, but as a doorway to a reimagined, purposeful life.
Marco collaborates with leading organizations such as the World Stroke Organization, the MENA Stroke Organization (MENASO), and Abu Dhabi’s Department of Health.
He is also part of Etihad Airways’ Accessibility Working Group and works on initiatives to advance employment opportunities for People of Determination, as people with disabilities are called in the UAE.
As a co-founder of Abu Dhabi’s first peer-led stroke support group—created by survivors, for survivors—Marco has helped establish a vital milestone in both the medical and human landscape of the United Arab Emirates.
He lives in Abu Dhabi, where he continues to write, walk, and spark conversations that matter.
Ahlia Griffiths
Ms. Ahlia Griffiths is a key advocate for the inclusion of Lived Experience in research. Sharing from a consumer perspective Ahlia has been invited as a Chief Investigator on funding applications, to co-author papers and textbooks, and to present about this work. Ahlia sits in a unique Lived Experience role within Monash university’s Health & Social Care Unit, supporting the voice of Lived Experience through all aspects of research. Ahlia sits in Australian state and national consumer roles and is motivated by the impact that both strategy and policy play in creating meaningful and long-term outcomes. Ahlia endeavors to ensure end user perspectives are heard through all aspects of health policy, strategy and review
Dominique Hamerlijnck, MPhil, MBA
Dominique Hamerlijnck has business experience as a change and project manager. Dominique has a Masters in Philosophy, specialised in ethics and a Masters in Business Administration. Dominique is one of the European Patients’ Academy on Therapeutic Innovation (EUPATI) fellows.
Dominique is a patient expert with lived expertise in the field of (severe) asthma. She is successful in getting the patient voice heard and included in development of care, trials, medicine and medical devices. Patient expert for the Dutch Lung Foundation, Patient Federation Netherlands, European Lung Foundation (ELF), European Federation for Airways and Allergy Disease Patient Association (EFA), European Patients Federation (EPF), IMI/IHI patient advisory group, BMJ, Frontiers, EUPATI and EUPATI NL, European Respiratory Society Clinical Research Collaboration on Severe Heterogeneous Asthma, Patient-centred (SHARP), IHI 3-TR and MobiliseD, SafePolyMed.
Dominique is a member of ISPOR and HTAi and an advisor for national and international organisations on research grant applications, policy development, HTA patient participation. Involved in developing research agenda’s and guidelines. Independent advisor to several pharma companies on patient engagement, trial development and protocols and lay summaries.
Matthew Jackman
They/Them
I am a doctoral researcher undertaking a National Disability Insurance Scheme Participant-funded PhD on Lived Experience Theory and Practice in Mental Health at the University of Sydney. My PhD project investigates the global mapping, history, activism and future direction of the user/refuser/consumer, psychiatric and trauma survivor, ex-patient and inmate, and Mad movement (c/s/x/m). Using a qualitative research design conducting WHO regional-based focus groups and deepening this knowledge with dyadic interviews with (c/s/x/m) leaders, the PhD addresses gaps in the broader movements' collective aims, goals, values, principles, sustainability and future direction. The PhD is grounded in Mad studies, and I am an insider-outsider Mad researcher, who identifies as part of the Mad Pride movement. I am a WHO Consultant for meaningful engagement in Non-Communicable ‘Diseases’. Furthermore, I was awarded the National Mental Health Advocate of the Year in 2020 by Mental Health Australia. I see my Madness as a dangerous gift that requires harnessing for the betterment of my (c/s/x/m) community and social movement, and my PhD as a conduit for Mad activism.
Matthew is a Commissioner (co-author) on the Lancet Psychiatry Commission on Lived Experience in Mental Health Research, led by Traumascapes and the Service User Research Enterprise at King’s College London.
Nikhil Jayswal He/Him
Nikhil is a Founder and Director at IBD Patient Support Foundation (India) - India's only nonprofit for the direct welfare of persons living with Inflammatory Bowel Disease (IBD) in India. He’s a 2020 fellow of Crohn’s and Colitis Young Adults Network (CCYAN) and a 2021 Soapstone Fellow of Enable India. Nikhil lives with Crohn’s Disease, an ileostomy and thyroid cancer.
Cheslie Johnson
Personal insight on how a Sickle Cell patient is treated and feels during the process of being in the ER, admitted to the hospital, and receiving out-patient services long term has been a unique journey within healthcare systems. Cheslie’s experiences have been of great suffering, self-education, advocacy, triumph, and understanding. Quality of care for patients like Cheslie, who are ill, misunderstood, and underserved within the healthcare community has become a new passion in her life. Being a lifelong patient, who is sharing her story, has been essential in serving on several organizations allowing her experiences to not be in vain and hopefully helped incorporate change for all patients.
Joanne Kershaw
Joanne is the Lived Experience Manager at the Childhood Dementia Initiative. She brings expertise in elevating lived experience to initiate positive change and raise awareness. She has worked across the lifespan of people living with dementia, from adult and aged dementia, now currently with children and young people with dementia conditions. She has extensive experience in community organisations and the not-for-profit sector, building inclusive and equitable networks through knowledge exchange and translation.
Manoj Lalu
He/Him
Manoj Lalu is an Anesthesiologist and Scientist at The Ottawa Hospital. He currently holds the University of Ottawa Junior Clinical Research Chair in Innovative Translational Research and the Canadian Anesthesiologists’ Society Career Scientist Award. His research is largely preclinical and translational, focusing on methods that could improve early clinical trials of novel therapies. One method that may improve this pathway is patient engagement in the research. His team regularly partners with patients to help plan and conduct both clinical and preclinical studies.
Knoll Larkin
For the past 18 years, Knoll has been working in academic research, hospital, and non-profit public health settings focused on access to care, community empowerment, building sustainable partnerships, and community-engaged research. Knoll received his master’s degree in public health from the University of Michigan in Health Behavior and Health Education. Prior to joining MICHR, Knoll was a project manager at the National LGBT Cancer Network and managed activities related to the CDC’s Networking2Save federal award (CDC’s National Network Approach to Preventing and Controlling Tobacco-related Cancers in Special Populations.) Knoll also served as the director of the Office of Cancer Health Equity and Community Engagement at Karmanos Cancer Institute in Detroit, where he led initiatives building community and patient capacity to engage in research.
Letisha Living
Letisha Living resides on the Gold Coast, Australia. She is a survivor of stroke and parent/carer of 2 children with complex needs. Letisha is passionate about amplifying the patient’s voice in health, medical and stroke research. She is on the Board of the Australian Stroke Clinical Registry (AuSCR) and is the current Chair of Gold Coast Hospital and Health Service Consumer Advisory Group where she sits on several committees including Gold Coast Health Board, Research Committee, Clinical Governance, Partnering with Consumers and Diversity & Inclusion.
Letisha has participated in over 25 research studies partnering in all research phases including co-design as a participant, and as part of the investigator team. She was a research participant in a project that helped shape the Gold Coast Health Consumer Engagement in Research Framework (CEIR).
Social Media
Aline Marcadenti de Oliveira
Registered dietitian. Specialist in clinical nutrition. PhD in cardiovascular sciences with a postdoctoral degree in nutritional biochemistry. Researcher at the Hcor Research Institute, serving as head of studies in the field of nutrition.
Gillian Mason
Gillian Mason is the Head of Research Program at the National Disability Research Partnership. She is a health consumer representative who is also a physiotherapist-researcher and strategic leader with 20 years’ experience of the health system from ‘both sides of the bedside’. She was one of the inaugural 25 Telstra Health Brilliant Women in Digital Health Award winners (2021), awarded for technical expertise and for transforming the way that people’s lived experience is valued and included in the design of human-centred, digitally-enabled, accessible health systems.
Penelope McMillan She/Her
Penelope McMillan brings lived experience of multiple disabling chronic illnesses to her voluntary advocacy work in ageing, carers, disability, chronic illness, and ME/CFS. Part of this work involves collaborating with researchers to develop, implement, publish and disseminate studies that inform innovation and best practice. Penelope also has experience on grant review panels, as co-leader of a research and innovation project, and training both researchers and consumers in consumer and community involvement in research.
Paul Mendoza
Mr. Paul Albert Mendoza, a distinguished advocate for psoriatic disease and President of Psoriasis Philippines. Paul also serves as the secretary of the International Alliance of Patients’ Organizations and leads Psoriasis Asia Pacific.
Paul's commitment to health advocacy is evident through his active participation in health forums and initiatives across the Asia-Pacific region and globally, where he champions the right to health. He is also a member of the Philippine Alliance for Patients with Chronic Illness, the Healthy Philippines Alliance, and the Alternative Budget Initiative for Health. In these roles, he advocates for non-communicable diseases (NCDs), persons with disabilities, access to medicine, patient rights, and other critical health agendas with the Philippine Government.
Paul has been actively involved in the Health Technology Assessment process for seven years and recently graduated as a Fellow of the European Union Patient Academy Training Institute in Spain.
Paul’s expertise and advocacy for equitable health care make him an influential voice in today’s discussion.
Linkedin profile: Paul Mendoza | LinkedIn
Greg Merritt
Greg Merritt grew up in rural Loami, Illinois where he escaped poverty through education. He is the first in his extended family to receive a college degree. He received his PhD from Michigan State University in Higher Education Administration (focused on Teaching and Learning) and his Bachelor’s in Psychology from Bradley University. He spent more than 30 years working in university housing.
After experiencing a sudden cardiac arrest and a heart attack in 2012, he decided to live his gifted second life in a new second career as the Founder of Patient is Partner, LLC, where he brings his experience as an educator, a community builder, and a “questionologist” to the healthcare world and hopes to find ways to create authentic partnerships between patients, their families, and care partners and healthcare clinicians and researchers.
He has spent the past six years studying, speaking, and writing on the topic of authentic patient partnerships, both in research and practice, and sits on numerous patient advisory boards.
He has been a speaker at numerous meetings and conference proceedings including the American Association of Cardiovascular and Pulmonary Rehabilitation (AACVPR), and State Society of Cardiovascular and Pulmonary Rehabilitation (CVPR) meetings in Michigan, North Carolina, and Ohio. He has also presented at numerous conferences representing the patient voice in research and practice in areas beyond cardiac rehabilitation. He is grateful to his bride of 20 years, and his three dogs who keep him walking.
Resources
- I’m committed to this group that is international vision https://www.patientrevolution.org/
- New funded program that has a “patient-partnered mentor” as part of scholar program https://melstar.med.umich.edu/patient-partners
- I co-lead the Michigan Institute for Clinical and Health Research’s Patient Partners Program - https://michr.umich.edu/building-new-paradigms-together-engaging-patient-partners-in-research/
- https://pcornet.org/patient-partners/
- https://www.pcori.org/about/pcoris-advisory-panels/advisory-panel-clinical-trials/biographies-advisory-panel-clinical-trials
Edith Prudence Mukantwari
Ms. Edith Mukantwari is the co-founder and Executive Director of Africa Diabetes Alliance, a community-based and community led organization focused on research, education, advocacy and support of people living with and/or affected by Diabetes Mellitus in Africa. She is a nutritionist by profession with a knack for seeking out and developing locally tailored and innovative solutions to improve prevention and management outcomes for diabetes and other NCDs in Uganda and Africa at large. Developing peer leadership and community engagement as well as ownership of program initiatives while also developing and supporting a network of NCDs change makers across the continent is always at the heart of her work. Edith is a Voices for PENPlus advocate, a person with lived experience of type 1 diabetes and coeliac disease as well as a peer educator.
Joel Nelson
Patient Advocate and Founder of Psoriatic Disease UK
An award-winning patient advocate who uses his story to inspire change, Joel shares his lived experience with chronic illness, pain and associated mental health challenges to educate whilst helping others feel less alone.
Telling his story of Psoriatic-associated Juvenile Idiopathic Arthritis around the world, he also hosts The Joel Nelson Podcast and The Chronic Pain Club Talk Show, where he facilitates conversations to help others share theirs, building a growing global community of peer support and awareness through his candid approach for both those living with chronic conditions and those who support them.
In 2024, Joel’s advocacy entered a new chapter as he founded Psoriatic Disease UK. This patient-led organisation aims to build bold and creative digital peer support spaces and raise awareness for everyone impacted by psoriasis, psoriatic arthritis and associated conditions.
Agnes Nsofwa She/Her
Executive Director - Australian Sickle Cell Advocacy Inc.
Agnes Nsofwa is the founder of Australian Sickle Cell Advocacy Inc. (ASCA), an organization dedicated to raising awareness, offering support, and improving the lives of those affected by sickle cell disease (SCD) in Australia. Her advocacy journey is deeply personal—born in Zambia, where SCD is more common, she witnessed firsthand the lack of awareness, healthcare access, and stigma associated with the condition. When her daughter was diagnosed with SCD in Australia, Nsofwa realized that despite the country's diverse population, knowledge about the disease was limited, particularly within African and Caribbean communities who are at higher risk.
Determined to address this gap, she established ASCA with the mission to educate the public, support patients and families, and advocate for better healthcare services and policies for those living with SCD. Under her leadership, ASCA has become a vital resource, giving affected individuals a platform to share their experiences, access critical information, and find a sense of community.
Agnes’s work extends beyond national borders. She actively participates in international conferences and collaborates with global organizations, contributing to a worldwide movement for improved sickle cell care and awareness. Her efforts have significantly elevated the profile of SCD in Australia, helping to ensure that patients receive the attention, understanding, and care they need.
Through ASCA, Nsofwa continues to empower others, challenge healthcare disparities, and drive systemic change. Her dedication has made her a prominent voice in the fight for sickle cell awareness, not just in Australia but across the globe.
Jeff Ordway
Jeff Ordway is a former High School teacher who was forced into early retirement because of health issues. He lives in Missouri, which is in the middle of the United States. He has been working in patient engaged research arenas for the last decade. His work focuses on the integration of patient voices into research utilizing the extensive data generated by electronic health records. He is particularly focused on establishing policies and procedures for embedding patients into research teams, setting expectations for engagement in research projects, and working toward establishing patient roles within the governance structures of research networks.
Jeff owns and maintains a small farm in Missouri, where he works to provide food sources to people in an area where food insecurity is an issue.
Michelle Phoenix She/Her
PhD, Reg. CASLPO Associate Professor
Michelle is an Associate Professor in the School of Rehabilitation Science at McMaster University and a CanChild Scientist. She has practiced clinically as a speech-language pathologist and holds an adjunct scientist position with KidsAbility. Her research focusses on improving access and equity in children's rehabilitation services. This includes topics of family-centred care, cultural responsivity and trauma informed care, parent well-being, and innovative models of service delivery. She works with a variety of community partners and studies ways that we can include often excluded populations in service design, delivery, and evaluation.
BC Pomeroy
They/Them
BC Pomeroy is a Queer Researcher, an Award-Winning Patient Public Engagement Specialist, an Author and Speaker, and an uninvited settler-person on the shared, traditional, ancestral, and unceded territories of the Snuneymuxw (snuh-nay-moe) territory also known as Gabriola Island, British Columbia.
BC has a particular interest in Justice, Equity, Diversity, and Inclusion Accessibility (JEDIA+) and has co-developed a Trauma & Resiliency Informed Practice program for Patient Public Engagement; a strength-based approach to patient public experience. Their unique combination of education, professional experience and lived experience has exposed them to progressively senior leadership opportunities in a variety of health care and research environments; from community laboratory services to patient safety, and quality improvement. BC landed in patient-oriented research after her daughter, Sophia, passed away in 2017 from a rare, complex, chronic disease at the age of 16. BC is currently leading the MAiD Program and Care Coordination for Provincial Health Services Authority in British Columbia, Canada.
Anna Samson (they/she)
Anna Samson (they/she) is a desi, queer, disabled person living in what is colonially known as Toronto, Canada. They are a writer, poet, patient partner, and an advocate for disability and mental health. They have ankylosing spondylitis, fibromyalgia, premenstrual dysphoric disorder and more. They have experienced AS and fibro symptoms since childhood but it worsened during their teens. Anna now uses a cane full-time and frequently uses a walker.
They have a Bachelor of Arts in English and use their writing and communication skills to create content about their conditions and how they affect their life. They are passionate about using their intersectional lived experiences to raise awareness for chronic illnesses, disabilities, mental health, and patient engagement in research. They were also a Social Health Award Finalist in 2022 for Advocacy Trailblazer!
Anna has completed the Patient Engagement in Research Training Program through the Canadian Arthritis Patient Alliance and is a part of several research projects. They have also completed the Patient Leader Certification Program from the Social Health Network. Additionally, as a Patient Engagement Research Ambassador with the Institute of Musculoskeletal Health and Arthritis under the Canadian Institutes of Health Research, Anna champions patient engagement at the forefront of research, amplifying perspectives from people with lived experience.
Follow along with their advocacy on social media @DisabilityWithAnna
Resources
- Paper on the benefits, barriers, and recommendations for youth engagement in health research - https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-024-00607-w
- Interview with the Arthritis Broadcast Network about how inclusive research with diverse patient partners leads to better healthcare- https://www.youtube.com/watch?v=5v_mJiXA0Lw
Rita Schriemer
Rita Schriemer is the Patient Research Partner (PRP) Coordinator for two hospitals in Nijmegen, the Netherlands. She facilitates meaningful collaboration between researchers and PRPs by offering tailored matchmaking, training sessions, and guidance throughout the research process. In addition to coordinating partnerships, she contributes to writing grant proposals and co-authoring scientific publications.
After retiring from her work as a sociologist due to health reasons, Rita unexpectedly found a new purpose as a PRP for a patient organization. What started as a chance encounter evolved into a passionate commitment to integrating the voices of people with lived experience into health research.
Today, she coordinates PRP efforts in a professional capacity and also continues to contribute as a volunteer PRP. Rita values the opportunity to help connect researchers and people with lived experience, aiming to make research more inclusive and relevant.
Zahra Sherwani She/Her
Zahra Sherwani is a PhD scholar at the Department of Psychology at Aligarh Muslim University. She is currently working on the chronic illness experience of young adults with autoimmune diseases examined through a psycho-social perspective. Her research explores how autonomy shapes and is shaped by these experiences and aims to develop mental health resources tailored for individuals with chronic illnesses. Living with Crohn's disease herself, she draws on her lived experiences to bring an empathetic perspective to her work. She is also a student counsellor at the Student Counselling Centre at her University.
Simon Stones, PhD
Simon (he/him) is an award-winning Medical Communications Specialist and a globally respected advocate for patients and carers, inspired by his own experiences with chronic inflammatory conditions since childhood. With over a decade of experience, he has helped to transform the way patients are involved in healthcare services and research across public and private sectors. Recognised as one of the UK’s top 100 most influential people with disabilities in both 2019 and 2020, Simon continues to champion meaningful change on an international stage. In 2023, he earned the inaugural Rising Star Award from the International Society for Medical Publication Professionals (ISMPP). Currently, Simon is the Chair-Elect of the European Alliance of Associations for Rheumatology Patient (EULAR PARE) Committee and serves as Scientific Director, Patient Engagement, at Amica Scientific, where he combines passion and expertise to champion the integration of meaningful patient engagement in medical affairs across the biopharmaceutical industry.
Recommended links
- Patient authorship of medical research publications: An evolution, revolution, and solution? https://onlinelibrary.wiley.com/doi/epdf/10.1002/leap.1607
- Patients in publications course: https://wecanadvocate.eu/patients-in-publications/
- ISMPP InformED Podcast on patients as a key stakeholder for scientific conferences: https://megaphone.link/FPMN7134181591
Joab Wako
Joab Wako is the Founder and Executive Director of Transplant Education Kenya (TransplantEd), an organization dedicated to raising awareness about organ donation and transplantation in Kenya. Under his leadership, TransplantEd has reached over 70,000 people through in-person events and social media campaigns over the past eight years. The organization has also partnered with other NGO's and transplant centers to facilitate impactful community outreach programs. Joab's journey as a health advocate began after living with chronic kidney disease for ten years and receiving a life-saving kidney transplant from his older sister, Nerima, eight years ago. This transformative experience inspired his commitment to health advocacy, leading him to become a lived-experience advocate. As a kidney transplant recipient, Joab is passionate about fostering hope and building support networks for individuals facing organ failure. He remains dedicated to advocating for safe, equitable access to organ donation and transplantation and actively seeks partnerships to advance this vital mission.
References/Resources
- WHO Framework for meaningful engagement: https://www.who.int/publications/i/item/9789240073074
- WHO Voice, agency, empowerment: https://www.who.int/publications/i/item/9789240027794
Social Media:
All TransplantEd socials are on our Linktree below. You may share these socials with my bio.
Logan Wong BSW, MSW RSW (He/Him)
Inclusion, Diversity, Equity, Accessibility and Anti-Racism (IDEAA) Professional,
Research Assistant, Health Policy Analyst
Logan identifies as a trans, bi-racial, Autistic wheelchair user and is a social worker &
equity, anti-racism, anti-oppression, & accessibility professional. He currently works at
McMaster University as a research assistant within the School of Rehabilitation
Sciences and is an entrepreneur and the owner of IDEAA Perspectives Training &
Consulting, a consulting firm specializing in Inclusion, Diversity, Equity, Accessibility and
Anti-Racism (IDEAA).
Resources
Logan’s website - http://www.ideaaperspectives.ca/
Socials:
Linkedin: https://www.linkedin.com/in/logan-wong-bsw-msw-rsw-37b353122/
Instagram: https://www.instagram.com/wolverine.on.wheels/ and https://www.instagram.com/ideaa_perspectives/
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