The Pioneering Patient Podcast with Global Heart Hub
Global Heart Hub is delighted to partner with The Pioneering Patient Podcast (Sagesse Healthcare Consulting) on a special series sharing Global Heart Hub Affiliate stories. First in this impactful series is Tara Robinson, CEO and Founder of Black Heart Association. Watch now.
Tara shares her journey of living with cardiovascular disease, which led her and her husband to establish Black Heart Association to help the US black community. They aim to not only raise awareness but also save lives through direct interactions with the community. Watch now to hear Tara’s remarkable story – the video has reached almost 60k views!
UPDATES FROM GLOBAL HEART HUB
Global Heart Hub Patient Networks
Global Heart Hub is evolving the way we work with our Patient Organisation Affiliate community.
In an effort to respond to the needs of our growing CVD community, our work in connected conditions and the breadth of aspects our Affiliates are interested in, we’re moving away from a patient council model and towards a network-based model.
This means that all Patient Organisation Affiliates currently grouped under Patient Councils will now be part of Global Heart Hub Patient Networks.
We’re making this change because a network model:
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Encourages more collaboration and connection between patient organisations;
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Is more flexible than the council format, providing opportunities for cross-network initiatives;
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Supports Global Heart Hub’s community continued growth and global expansion;
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Allows us, as a team, to better support and respond to Patient Organisation Affiliates.
Our goal is to create a space where Patient Organisation Affiliates can connect more freely, collaborate across conditions and regions, and access opportunities without being limited by formal structures. We’re excited about what this evolution will enable for our community and look forward to continuing to work closely together.
Heart Failure Patient Network – New Chair
Global Heart Hub is delighted to announce the appointment of our Affiliate Nicole McKelvie, Chairwoman and Co-founder, Heart Failure Warriors Northern Ireland, as the incoming Chair of Global Heart Hub’s Heart Failure Patient Network. Diagnosed with heart failure at the age of 45, Nicole brings invaluable lived experience to her role and is deeply committed to improving the lives of people living with heart failure. We look forward to working closely with Nicole and the Network to advance our shared heart failure priorities.
We would like to extend our sincere thanks to our outgoing Chair, Dr Marilyn Prasun, The Heart Failure Patient Foundation, USA, for her outstanding leadership and significant contributions over the past two years. Thank you, Marilyn, for your dedication and impact.
Learn more about the Heart Failure Patient Network.
Welcoming New Team Members
Global Heart Hub is delighted to welcome new team members:
- Valérie Balvert, EU Projects Associate
- Ludovica Rizzo, Networks Associate
CLINICAL RESEARCH INITIATIVE
New Patient-Focused Clinical Research Initiative
Global Heart Hub launched a new Clinical Research Initiative with trusted clinical research information and a Clinical Trial Portal to empower the cardiovascular disease patient community with the knowledge, tools and opportunities to be active participants in shaping the future of cardiovascular care.
The initiative aims to make cardiovascular health research more accessible and relevant. When patients are engaged in research, the outcomes are better — a reduced burden of disease, with treatments which meet the ‘real life’ needs of the community they serve. Learn more.
Clinical Research Initiative – Phil Collis Testimonial
Watch now to hear from Phil Collis, a Patient Advocate based in the UK. Phil was involved in the creation of GHH’s Clinical Research Initiative, and he shares his patient experience of clinical trials.
Webinar Recording: How can Patients Engage in Heart Health Research?
Watch back our recent webinar introducing Global Heart Hub’s new Clinical Research Initiative, a major step forward in empowering cardiovascular patients around the world to access and engage with clinical trials.
NEW PUBLICATIONS
The State of Cardiovascular Health in the European Union
Read the new publication from OECD – OCDE (Organisation for Economic Co-operation and Development): The State of Cardiovascular Health in the European Union.
Global Heart Hub was delighted to provide input to this report and we thank our patient Affiliates for contributing their lived experiences to be featured in the report. The publication reflects the OECD’s continued commitment to supporting EU Member States in addressing the growing burden of CVDs and related conditions.
Development of a Framework for European Health Technology Assessment
Global Heart Hub was proud to contribute to a new publication in the Journal of Market Access & Health Policy, Development of a Performance Measurement Framework for European Health Technology Assessment: Stakeholder-Centric Key Performance Indicators Identified in a Delphi Approach by the European Access Academy.
The objective of this work was to support the implementation of the European Health Technology Assessment Regulation (EU HTAR) and optimise performance of the evolving EU HTA system. An inclusive multi-stakeholder framework of key performance indicators for success measurement was developed. Read now.
EUROPEAN INITIATIVES
Launch of the first-ever EU Cardiovascular Health Plan
December 16 was a monumental day for cardiovascular health in Europe with the release of the first-ever EU Cardiovascular Health Plan. We’re proud of our work with our EU Affiliates and the European Alliance for Cardiovascular Health (EACH) in advocating for a comprehensive EU Cardiovascular Health Plan. The “Safe Hearts Plan” positions cardiovascular health as a shared European priority that strengthens resilience, equity and sustainability across Member States.
- Read now: Communication from the Commission to the European Parliament, the Council, the European Economic and Social Committee and the Committee of the Regions on an EU Cardiovascular Health Plan: The Safe Hearts Plan
- Factsheet: The EU Safe Hearts Plan
- Questions and answers on the EU Safe Hearts Plan
Now let’s put this plan into action!
Without deliberate commitment to act at national level, our vision for cardiovascular health in Europe will falter. In addition to the EU Cardiovascular Health Plan, we need the co-creation of national cardiovascular health action plans by government, regional authorities and cardiovascular health stakeholders including the patient perspective in every Member State.
Global Heart Hub will consult with our EU Affiliates on the adoption and implementation of the EU Cardiovascular Health Plan at a national level. Each national plan must reflect national context, culture, lived experience and provide an essential springboard for national implementation of the EU Cardiovascular Health Plan.
EACH Cardiovascular Health Summit
The European Alliance for Cardiovascular Health (EACH), of which Global Heart Hub is a partner, hosted the EACH Cardiovascular Health Summit in Brussels from 10-11 December 2025.
The Summit attracted expert speakers and over 200 attendees, where policy makers, patient groups, industry, scientists and others debated subjects including best practices in national approaches to combating cardiovascular disease, the need for collaboration across disciplines and across borders, and how to address inequalities in access to cardiovascular care, one week ahead of publication of the EU Safe Hearts Plan.
Special thank you to the panel “Patient Voices in Action: How Lived Experience Can Guide a Transformative EU Cardiovascular Health Plan”, with Francesca Musso (HCM Patient Foundation, Global Heart Hub Affiliate), Kostas Tagkalos (International Diabetes Federation Europe), Diana Wong Ramos (Portugal AVC, Stroke Alliance For Europe (SAFE), Global Heart Hub Affiliate) and Marc Rijken (Global Lp(a) Taskforce, FH Europe Foundation).
Be Prepared with RESIL-Card
Here is a selection of news and updates from our patient organization affiliates around the world.
The EU-funded RESIL-Card initiative has developed a practical tool to help EU hospital cardiovascular teams assess, strengthen and continuously improve the preparedness of their services in the event of future crises, such as pandemics, climate-related events, resource constraints or others. Designed and validated with clinicians, system experts and patient representatives, the tool is based on real clinical pathways and has proven to be relevant and applicable.
By helping hospitals to measure their preparedness and implement targeted improvements, RESIL-Card strengthens the resilience of cardiovascular services in the EU improving system reliability, supporting health professionals, and ultimately ensuring that patients receive uninterrupted, high-quality care at all times.
Launching soon, the RESIL-Card tool will help improve the reliability and continuity of care that people living with cardiovascular diseases depend on throughout their journey. Patient representatives played an active role in shaping the tool, ensuring that patients’ needs and experiences are embedded in how hospitals strengthen heart care services.
Global Heart Hub is delighted to join the RESIL-Card Consortium ensuring patient perspectives are reflected throughout this project and will support the tool launch dissemination and communications over the coming months.
RESIL-Card Webinar: Learn how hospital cardiovascular teams in Europe can improve the preparedness of their services for patients in the event of future crises
Date: Thursday, 12 February, 2026
Time: 13:00 – 14:00 GMT | 14:00 – 15:00 CET
Global Heart Hub Patient Organisations and advocates in Europe are invited to contribute to the dissemination of the RESIL-Card tool and help ensure that resilience efforts reflect patient needs and real care experiences in times of crisis. Register now!
Better prepared and more resilient cardiovascular care systems will help enhance patient safety, continuity of care and confidence in the healthcare system.
This project has received funding from the European Union’s EU4Health work programme under grant agreement No. 101129203.
New European Stroke Action Plan Urges Immediate Action
The updated Stroke Action Plan for Europe has been published in the European Stroke Journal, urging European governments to act now by implementing and funding comprehensive national stroke strategies in line with its recommendations.
This call for decisive action is reinforced by the recent OECD report ‘The State of Cardiovascular Health in the European Union’, which identifies stroke as the second leading cause of death from cardiovascular disease and a major contributor of acquired long-term disability.
Developed by the European Stroke Organisation and the Stroke Alliance for Europe, the Stroke Action Plan for Europe sets a clear roadmap for reducing the burden of stroke across Europe by 2030. Read more.
European Innovative Health Initiative – Hospital@Home – Launches to Transform Hospital Care Delivery
Global Heart Hub is a Hospital@Home Consortium Partner
Leading academic hospitals, industry innovators, patient organisations and technology partners across Europe came together 8–9 January in Rotterdam to officially launch Hospital@Home (H@H), a major new initiative designed to deliver hospital-level care directly in patients’ homes.
This marks the start of a five-year program that aims to redefine how healthcare systems deliver safe, efficient and patient-centred care. Hospital@Home addresses a growing need across Europe: rising hospital demand, increasing pressure on healthcare staff, and the need for more resilient, sustainable care models. By combining wearable monitoring, AI-driven predictive analytics, remote clinical supervision, and patient-reported outcomes, H@H will enable patients with chronic conditions, such as cardiovascular disease, pulmonary disease, minor stroke/TIA, migraine and cluster headache, to receive high-quality treatment in the comfort of their homes. Read more.
NEWS FROM OUR AFFILIATES & CVD COMMUNITY
Association of Cardiac Patients Officers of the Hellenic Navy, Coast Guard and Friends
Representation at the New Year’s Pie Cutting Ceremony of SFEE
The Vice President of the Association of Cardiac Patients Officers of the Hellenic Navy, Coast Guard and Friends, Mr. Antonios Psaroudakis, represented the Association at the New Year’s traditional pie cutting ceremony organized by the Hellenic Association of Pharmaceutical Companies (SFEE).
The event took place on Wednesday, January 14, 2026, and was attended by the Minister of Health of Greece, accompanied by the Deputy Ministers of Health, as well as a large number of representatives from the Greek business and pharmaceutical community.
The presence of the Association at this important institutional event highlights its ongoing commitment to dialogue, cooperation and active participation in initiatives related to public health, pharmaceutical policy and the support of patients with cardiovascular conditions.
The Association of Cardiac Patients Officers of the Hellenic Navy, Coast Guard and Friends continues to strengthen its relations with institutional and social partners, promoting awareness, prevention, and improved quality of life for cardiac patients.
Canada’s Brain and Heart Failure Priority Setting Partnership
Survey for future brain-heart failure research in Canada
Canada’s Brain and Heart Failure Priority Setting Partnership (“Brain-HF PSP”) is a pan-Canadian research project co-led by Jennifer Monaghan (Patient Partner) and Dr. Karen Bouchard at the University of Ottawa Heart Institute. This work involves 12 Steering Group Members, including GHH Affiliate, HeartLife Foundation.
We know that people with heart failure may experience changes to their brain, their thinking, or their mental health. What we know about these connections, however, we have been driven by researchers’ questions. We have not yet considered the questions of those who are directly affected.
We are reaching out to people with lived or living experience with heart failure (as a patient, caregiver, or healthcare provider) to co-develop priorities for future brain-heart failure research in Canada. Complete the survey here:
Learn more here.
Estonian Stroke Patients Society
Estonian Stroke Patients Society Receives Recognition
The end of the year brought a meaningful recognition for the Estonian Stroke Patients Society, for which we are truly happy and grateful.
The Estonian Stroke Patients Society was honoured with the “Outstanding Organization for People with Disabilities 2025” award by the Estonian Chamber of People with Disabilities.
This recognition acknowledges our work in advocating for people affected by stroke and other cardiovascular diseases and their families, and reinforces the importance of strengthening patient-centred, integrated and inclusive care pathways.
We sincerely thank our members, partners and collaborators for their trust and continued cooperation.
Learn more here.
FH Europe Foundation
Webinar trilogy – From Evidence to Everyday Life: Understanding the ESC-EAS Dyslipidaemia Guidelines
This three-part webinar series explores the ESC–EAS Dyslipidaemia Guidelines and what they truly mean for patients, families, and those who support them. Designed for patients, caregivers, and advocates, the sessions will unpack how medical guidelines are developed, what is new in the 2025 update, and how these recommendations can support shared decision-making in real-world care. Through live discussions with experts and patients, interactive Q&A, and practical explanations, the series will take place on 12, 19, and 26 February 2026 at 18:00 CET.
Learn more here.
Foundation for Sarcoidosis Research
Coalition Launched by the Foundation for Sarcoidosis Research Expands Employer Support for Clinical Trial Participation
The Coalition to Transform Clinical Trial Engagement (CTCTE), a multi-stakeholder initiative launched by the Foundation for Sarcoidosis Research (FSR) to reduce barriers to clinical trial participation, is proud to share that its newest effort, the Champions for Change – PTO Initiative, now includes 14 employers committed to offering paid time off (PTO) for employees who participate in clinical trials. By providing at least one day of PTO, these Champions are helping address job-related barriers that often prevent patients and caregivers from participating in research.
This milestone builds on the U.S. Department of Labor’s 2024 clarification that the Family and Medical Leave Act (FMLA) may be used for clinical trial participation by patients and family caregivers – a landmark policy win driven by FSR and CTCTE that impacts more than 60 million employees nationwide.
Learn more here.
Gwent Defibbers/Defibbers Cymru
Mike Morgan receives an MBE
Congratulations to Mike Morgan, Chair of Gwent Defibbers and Defibbers Cymru, on being awarded the Member of the Order of the British Empire (MBE) in the King’s New Year Honours.
This honour recognises Mike’s outstanding voluntary and charitable service in Wales.
Mike founded Gwent Defibbers in 2009 to provide vital support and knowledge to individuals living with an Implantable Cardioverter Defibrillator (ICD) or CRT-D. The group meets bi-monthly, welcoming guest speakers who offer advice and guidance to members, their families, and friends—helping everyone understand that life goes on after receiving an implant.
In addition, the group produces an informative booklet packed with practical tips and resources for living with an ICD, further strengthening its commitment to community support and awareness.
Learn more here.
HCM Patient Foundation
Quiz to test HCM knowledge of patients
We have developed and deployed a quiz to test the knowledge of HCM Patients. The quiz consists of 30 multiple choice questions worth 3 points each and 5 true/false questions worth 2 points each, or a total of 100 points.
The English quiz is available here, but the quiz is also available in French, Dutch, Spanish, Italian and German. Please contact us to get the link to these language versions.
Learn more here.
Special Christmas episode of HCM Pills webcast – Dora Deliyska plays the piano for First European HCM Meeting
The First European HCM Patient Meeting took place in Vienna in October 2025. One of the highlights of the event was a concert by the renowned pianist Dora Deliyska who interpreted etudes based on aberrations of cardiac electrophysiology written by Prof. Elaine Chew from King’s College in London.
During the concert Prof. Chew and her team also conducted a scientific experiment, recording the heart indicators of attending patients and of other guests. Stay tuned for the results!
In this recording you will see interpretations of the following arrhythmias:
- Etude Nº1: Atrial Fibrillation
- Etude Nº2: Atrial Flutter
- Etude Nº3: Bigeminy Sea-snatch (Ventricular Bigeminy)
- Etude Nº4: The Girl with the Labile T Waves
- Etude Nº7: Wenckebach Lullaby (Wenckebach Block)
- Etude Nº6: A La Bru Rondo Turk (Ventricular Ectopics)
Learn more here.
HeartLife Foundation
HeartLife Foundation Webinar E3: Your Path to a Heart-Healthy Cholesterol Level
E3 Webinar Series: Engage. Educate. Empower.
📅 February 3
🕛 12:00 PM PT | 3:00 PM ET
HeartLife is proud to continue the E3 Webinar Series, designed to connect lived experience with trusted clinical expertise on the topics that matter most to our community.
This session focuses on cholesterol and heart health, offering both practical insight and clinical understanding. Participants will explore how lipids, including cholesterol and triglycerides, influence cardiovascular risk, and why proactive cholesterol management plays a critical role in preventing heart disease.
Debra Quercetti will share her lived experience managing cholesterol as part of her heart health journey, highlighting real-world challenges, questions and learnings.
Dr Rob Hegele will provide a clinical deep dive into how cholesterol works in the body, including key markers such as lipoprotein(a) (Lp(a)) and apolipoprotein B (ApoB), and their importance in cardiovascular risk assessment and prevention. The session concludes with a moderated Q&A.
Learn more here.
HeartLife Women and Canadian Women with Medical Heart Issues
Life In Hearts Emagazine – Issue 12
We’re stepping into a new year with gratitude, courage and the powerful voices of women living with heart conditions across Canada. We also have an updated look reflecting HeartLife Women!
This issue is filled with heart‑journey shares, reflections, advocacy and practical tools — all rooted in connection and community. Stories full of resilience, creativity and purpose, this issue reminds us that heart health is emotional, social and deeply personal.
Learn more here.
Her Heart
Her Heart Report Card 2025: The Unequal Burden of Heart Disease on Australian Women.
The Her Heart Report Card is a valuable resource which presents key metrics related to the incidence, prevalence and management of cardiovascular disease in Australian women.
The first edition of the Her Heart Report Card, released in 2023, focussed on inequalities between men and women in regards to diagnosis, treatment and care.
The second edition, launched in October 2025 at the Her Heart Annual Conference, looked more deeply at the inequalities faced by women in regional or remote communities as compared to women living in major conurbations.
The data was drawn from a number of different studies and is designed as a snapshot to support health services, policy makers and researchers in identifying where investment and targeted action are most urgently needed to improve access to timely and high-quality care for regional women. This is an essential part of closing the gap in cardiovascular outcomes for all Australian women.
Learn more here.
LMNA Cardiac
LMNA-331 Research Update: Progress, Insights, and How You Can Help
Over the past year, significant progress has been made within the international LMNA-331 research program, focusing on individuals carrying the LMNA R331Q variant. This inherited form of cardiomyopathy can vary greatly in severity—even among members of the same family—ranging from mild symptoms to severe arrhythmias and advanced heart failure.
Learn more here.
Announcing LMNA Cardiac In-Person Patient Meeting — San Francisco, California | May 2026
We are pleased to announce the next LMNA Cardiac In-Person Patient Meeting is taking place in San Francisco, California in May 2026. Following the success of our first U.S. in-person patient meeting in Raleigh, North Carolina, this event will once again bring together patients, family members, caregivers, clinicians, researchers, and advocates from across the country.
Learn more here.
Pacientes de Corazón (PACO)
Strengthening Congenital Heart Disease Care Through Echocardiography
On November 24, PACO – Pacientes de Corazón donated a specialized echocardiography ultrasound system to the Instituto Nacional de Cardiología Ignacio Chávez in Mexico. This equipment will enhance the diagnosis and follow-up of more than 1,400 patients per year within the Adult Congenital Heart Disease Program.
By improving diagnostic precision and enabling earlier detection, this technological contribution strengthens clinical decision-making and expands life opportunities for people living with complex heart conditions.
The donation was carried out with the presence of institutional authorities, highlighting the value of collaboration between civil society, healthcare institutions, and strategic partners to advance cardiovascular care.
At PACO, we continue to promote initiatives with real, sustainable, and human impact—because every heartbeat matters.
Learn more here.
Expanding Access to Cardiovascular Prevention Through Community Health Action
Through the 4th Cardiovascular Health Fair held in Mexico City, PACO – Pacientes de Corazón provided free cardiovascular screening and preventive services to 230 people.
Services included glucose and lipid testing, blood pressure and heart rate measurement, electrocardiograms, vaccinations, eye fundus exams, men’s health services, and medical and nutritional counseling. To ensure timely diagnosis, 19 free echocardiogram vouchers and 19 electrocardiogram vouchers were also granted to individuals requiring further evaluation.
Additionally, 117 free preventive test vouchers were distributed for triglycerides and cholesterol (HDL, LDL, and total).
These actions reflect PACO’s commitment to prevention, early detection, and equitable access to cardiovascular healthcare, helping reduce the risk of complications and improve quality of life.
Learn more here.
Patient Safety Learning
When Lived Experience is Embedded at Every Stage of Research
Risa Mallory is a retired psychotherapist from Canada. After a serious cardiovascular event in 2018 she became a patient advocate collaborating with organizations and institutions across the globe.
In this blog, Risa explains why engaging partners in research as collaborators needs to become a cornerstone of more meaningful, ethical and impactful, science. Patient engagement in research transforms research from a top-down process into a shared journey of discovery.
It improves quality, builds trust, fosters inclusivity and ensures that science serves its most important purpose – improving lives.
Learn more here.
Rock from the Heart
Rock from the Heart – From Disco Lights to Arena Nights: A concert for aortic disease awareness
The Rock from the Heart Benefit Concert is the celebration that brings our mission to life through music, connection and community.
This unforgettable night is designed to gather survivors, families, supporters and partners in a powerful, uplifting environment where awareness meets energy and hope meets action.
While Rock from the Heart is known for education, the concert is where people connect, celebrate life and realize they are part of something bigger. It creates space for joy, healing and togetherness while continuing to shine a spotlight on aortic and heart valve disease. This event is not about fundraising alone. It is about visibility, unity and showing the world that education can be powerful, engaging, and approachable.
Whether you are a survivor, caregiver, healthcare professional, or supporter, the concert is a reminder that none of us walk this journey alone. We are a community. We are a family. And together, we Rock.
Learn more here.
Rock from the Heart Aortic Ed Sessions
Rock from the Heart Aortic Ed Sessions return to Shakopee, MN on Friday, February 13, 2026, from 1:00–9:00 PM CST at Canterbury Park.
This annual event brings together medical experts, survivors and advocates to raise awareness about aortic and heart valve disease, celebrate survivors, honor those we have lost, and strengthen a supportive community.
The Aortic Ed Sessions feature leading physicians discussing the latest advancements in research, early detection, treatment and life after diagnosis. These sessions are designed to educate and empower patients, families, caregivers and healthcare professionals with information that truly saves lives.
We are excited to offer full virtual attendance and strongly encourage registration for those who cannot attend in person. The virtual option allows participants from anywhere to access this critical education and inspiration. The evening includes a Survivor Recognition Dinner, honoring resilience, remembrance and connection.
Learn more here.
SAMS
SAMS Closes 2025 with 2,494 New Lifeguards
This year, SAMS has set a record number of workshops delivered in schools and companies, thanks to the trust of partner organizations and collaborators. The agreement with CaixaBank, the Notaris en Cor program, and organizations such as Assistència Sanitària—who continue to renew their commitment—have been key to this success. Added to this are the companies that place their trust in SAMS, along with the sponsorships provided to schools to train first-year baccalaureate students and first-year vocational training students. A year built around a shared goal: training the lifeguards of the future.
SAMS Hosts Its First Wellness Retreat in the Prades Mountains
From November 28 to 30, SAMS hosted its first retreat in the Prades Mountains (Tarragona). A weekend to disconnect and reconnect with what truly matters, surrounded by nature. Participants enjoyed yoga, music therapy, and healthy cooking workshops. An experience guided by professionals, designed to promote wellbeing and personal balance.
Learn more here.
SCAD Nederland
Meet SCAD Nederland
SCAD Nederland celebrates its 12th anniversary this year. What started as a small Facebook group for peer support has grown into an active community of over 1,300 members. Our aim has always been to provide support, share knowledge and experiences, and help people navigate life with SCAD.
Our core team consists of six patient experts dedicated to supporting the SCAD community. Early last year, we launched our website, making information, news and interviews more accessible for patients and stakeholders.
Collaboration is central to our work. We collaborate with other patient organizations and healthcare professionals to share knowledge, empower one another and improve care for SCAD patients. Our mission is to support peers, share knowledge and contribute to SCAD research.
As a recent affiliate of Global Heart Hub, we value international connection and look forward to working with other GHH partners to strengthen the global SCAD community.
Learn more here.
Stichting VrouwenHart
Stichting VrouwenHart celebrates 5 years with a special gathering in The Hague
On Monday 9 February 2026, Stichting VrouwenHart marks its 5-year anniversary with a special meeting at Nieuwspoort in The Hague. This milestone is both a moment to reflect and an invitation to look ahead together.
We will share the latest developments in women’s heart health, in the Netherlands and internationally, with contributions from leading experts: Prof. dr. ir. Hester den Ruijter (Professor of Cardiovascular Disease in Women), Prof. dr. Jeanine Roeters van Lennep (Professor of Cardiovascular Prevention, with a focus on sex-specific risk factors), and Sanne Peters (Associate Professor of Epidemiology and Public Health).
Alongside scientific insights, we will highlight what women’s lived experiences continue to teach us about recognition, diagnosis and care. This anniversary gathering reflects our core belief: that better care starts with listening, collaboration and shared knowledge.
Learn more here.
Team Titin
Webinar: Heart-Healthy Lifestyle Tools for People with Titin (TTN) – Related Heart Conditions
Please join Team Titin for a free educational Zoom webinar (January 28, 2026 6:00–7:15 PM ET) designed for individuals and families affected by TTN-related heart conditions or who carry variants in the TTN gene and may be at risk for heart health concerns. As we begin a new year, this webinar will focus on practical tips to help you better understand your heart health and feel empowered to take proactive steps – alongside your healthcare team.
You’ll learn about TTN-related heart conditions; highlights from recent research in titin and heart health; lifestyle and environmental factors that may influence heart health; exercise considerations for people with TTN-related cardiomyopathy; current recommendations for the care and management of heart conditions. Includes a live question-and-answer session with our expert speakers, Professor Diane Fatkin, MD and Dr. Renee Johnson, PhD.
Learn more here.
Timothy Syndrome Alliance
Connect CACNA1C Global Network Conference in Cardiff
The Timothy Syndrome Alliance (TSA) is excited to host our Connect CACNA1C Global Network Conference in Cardiff on the 22nd-23rd July 2026. This event is open to everyone, whether you are living with a CACNA1C variant, a parent or carer, a researcher, clinician, advocate, or simply interested in learning more about CACNA1C-Related Disorders.
This conference aims to bring together patients and researchers to create a patient-prioritised agenda for future research. Day 1 will feature presentations from international leaders in CACNA1C research, complemented by talks selected from submitted abstracts and a dedicated poster session. Day 2 will focus on lived experiences, patient and family voices, and opportunities for future research collaboration.
If submitting an abstract, please note the submission deadline is 16th February.
Learn more and register here.
The One New Heart Tanzania
Jackrine’s Journey to Healing: A Story of Determination, Hope and Community Support
At first, the plan was to send her to the United States for surgery at Children’s Memorial Hermann through a sponsorship opportunity. Sadly, that hope came to a halt when Jackrine and her father were unable to obtain U.S. visas. Just when it seemed that the door had closed, another chance appeared, this time through a heart surgery camp in Kenya organized by Care for a Child’s Heart. Unfortunately, family circumstances made it impossible for her to travel, and that opportunity also slipped away.
Despite these painful setbacks, Jackrine’s story did not end there. Hope was rekindled when arrangements were finally made for her to receive treatment at home. On March 6, 2025, she successfully underwent a PDA device closure procedure at Jakaya Kikwete Cardiac Institute (JKCI). Today, Jackrine is healthy and attending school like any other child.
Learn more here.
When Love Travels Far Enough to Heal a Tiny Heart
In January 2026, Melissa and her husband traveled from the United States to Tanzania to celebrate their honeymoon. Through a friend’s recommendation, they chose to travel with One Heart Travel Limited, enjoying a seamless and memorable experience across Arusha and Zanzibar.
What they did not know was that their journey would also help save a child’s life.
In Tanzania, many children born with heart conditions face limited access to diagnosis and treatment, placing heavy burdens on families and the public health system. One New Heart Tanzania was founded to address this challenge by providing free heart diagnosis and treatment to children in need. To ensure sustainability, the organization leverages tourism through One Heart Travel Limited, reinvesting 50% of travel profits into life-saving children’s heart care.
This approach demonstrates how responsible tourism can reduce healthcare burdens, protect families, create local employment and turn travelers into partners in global health equity.
Learn more here.
