Scientific Poster Abstracts
26-28 October 2026
RAI Convention Centre, Amsterdam
Information for presenters
Please print your poster in advance in portrait orientation, A0 size (118.9 cm high × 84.1 cm wide) . Bring your poster on the first day of the conference and exhibition (Tuesday 27 October) . Pins will be available to mount your poster.
You can choose an available space to display your poster on a first-come, first-served basis . Please be mindful of other poster presenters and leave enough room for neighbouring posters.
For poster session timings, please refer to your presenter confirmation or contact the event team. You can also view the latest event agenda .
The Poster Zone
2026 poster submissions
Browse the authors, organisations and research titles below.
59 submitted posters
| Author | Organisation or academic institution | Poster title |
|---|---|---|
| Adriana Andrić | Aurora Insights | Patterns in Orphan Designation Outcomes at EU Marketing Authorisation: A Review of 2024–2025 Approvals |
| Alex McCormick | Coronado Research | Personalising Scientific Content in Rare Disease: Using Large Language Models to Produce Targeted and Tailored Medical Communications Outputs |
| Andreas Schittny | Innomedica Schweiz AG | Challenging first-line Doxorubicin with better tolerable Talidox in advanced soft-tissue sarcoma - Opportunity for co-development and licensing |
| Andreas Zumbuehl | Innomedica Schweiz AG | NANOLIPOSOMAL GM1 (TALINEUREN) ACTS ON CONVERGENT MITOCHONDRIAL, ER AND SYNAPTIC MECHANISMS IN PRECLINICAL MODELS OF ALS |
| Andria Joseph | York Health Economics Consortium | Beyond the diagnosis: A qualitative research protocol exploring patient and clinician experiences of rare gastrointestinal diseases misdiagnosed as functional and somatic disorders |
| Cassi Friday | Cure HHT | Clinical Spectrum of Hereditary Hemorrhagic Telangiectasia: Data from the Comprehensive HHT Outcomes Registry of the United States (CHORUS) |
| Charlotte Ahmadu | York Health Economics Consortium | Hard to stomach? A scoping review protocol of rare gastrointestinal diseases misdiagnosed as functional and somatic disorders |
| Chloe Lok | Kx Advisors | Beyond C5: The Next Wave of Innovation in Complement Pathway Inhibition |
| Claudia Cozma | Centogene GmbH | Ganglioside quantification in Dried Blood Spots: a potential biochemical tool to diagnose and monitor metabolic and neurodegenerative diseases |
| Cornelius Patrick Labella | University of Lincoln | Comparative Photocatalytic Degradation of Amoxicillin and Rhodamine B Using Titanium Dioxide Under Blue LED Irradiation: Analytical Monitoring, Kinetic Evaluation and Environmental Forensic Toxicological Implications |
| CORTIAL Lucas | THELONIUS MIND | TM ReMap: an AI-assisted framework to assist the translation of underexploited evidence into drug repurposing opportunities |
| David Allison | TREAT-NMD | PaLaDIn – improving decision making in neuromuscular diseases. What are the benefits of using the Interactium data platform? |
| David McMinn | OpalMedica | Assessing the accuracy of an automated machine learning approach for the detection of rare and underdiagnosed diseases in primary care |
| Donato Bonifazi | TEDDY Network | Strengthening Young Patient Involvement in Paediatric Rare Disease Research through European Initiatives |
| Dr Benedikt Wefers | Ozgene Pty Ltd | Genetically Engineered Mouse Models to Support Drug Development in Rare Diseases |
| Dr. Ornella Fumagalli | Granzer Regulatory Consulting & Services GmbH | From Orphan Designation to Marketing Authorisation: Regulatory Support for Rare Disease Therapies |
| Elena Belonogova | King’s College London | Building Scalable Care Pathways in Rare Diseases: Lessons from Epidermolysis Bullosa |
| ELENA CAPRONI | HELAGLOBE SRL | Making the invisible visible: a "core” Caregiver Needs Questionnaire for co-created with patient organisations |
| Eleni Pitsiniaga | Unravel Biosciences | rareSHIFT™: Turning Patient Biology into Personalised Therapeutic Discovery |
| Emma Prentice | Tolley Ltd. | From early access to routine reimbursement: how does the SMC ultra-orphan pathway address evidence gaps to support reimbursement decisions? |
| Eugenio Rizzello | Staatz Consulting | Approved but Not Reimbursed? Orphan Advanced Therapy Medicinal Products in Germany, France and England |
| Evelyn Schlegl-Zanetti | HealthEcon AG | Additional Benefit Without Head-to-Head Evidence: How Does the GBA Determine the Additional Benefit Over the Appropriate Comparator Therapy? |
| Flaminia Macchia | Orphanet-AISBL | Turning Orphanet data into actionable knowledge: How Orphanet-AISBL supports all stakeholders |
| Fleur Meijers | PLN Foundation | Establishing Patient Insights for Future Patient Engagement in PLN-R14del Therapy Development |
| Gerdi Strydom | Valid Insight | Rare disease as a shared societal responsibility: A patient advocate’s experience and the policy landscape for change |
| Harrison Goldspink | HealthLumen | Modelling the Impact of Improved Diagnosis and Treatment with Silencers on Disease Progression in Hereditary Transthyretin Amyloidosis with Polyneuropathy (ATTRv-PN) |
| Ida Mirković Knaus & Marko Buljevac | Rare Diseases Croatia & Department of Social Work, Faculty of Law, University of Zagreb | Healthcare transition in rare diseases: A comparative analysis of patient experiences across Croatia, Serbia, and North Macedonia |
| Jana Benesh | ICON, plc | Raregivers Emotional Journey Map: Mapping Cycles of Hope and Grief Across the Rare Disease Caregiving Journey |
| Josie Godfrey | Realise Advocacy | From Policy Evaluation to Practical Tool: A Replicable, Lived Experience-Led Model for Understanding What Reaches Rare Disease Patients |
| Josie Godfrey | Realise Advocacy | Rare Children, Unequal Access: Reforming HTA to Capture the Value of Therapies for Paediatric Life-Limiting Conditions |
| Lien Beckers | Leuven.IRD | From Fragmentation to Collaboration: Building an Integrated Rare Disease Ecosystem at Leuven.IRD |
| Lies Schoonaert | Hict | Beyond the Decision to Screen: Addressing Implementation Roadblocks to Newborn Screening Across the EU |
| Lindsay Marjoram | Barth Syndrome Foundation | Understanding Barth syndrome through the Lens of the BarthINSIGHTS Registry |
| Lucia Politi | Helaglobe srl | From patient needs to care models: an Italian real-time Delphi consensus on the multidisciplinary management of Anderson–Fabry disease |
| Mahrez FISSAH | University of Blida 1 Faculty of Medicine | Hereditary Angioedema: A Multisystemic Disease with Life-Threatening Manifestations |
| Manca | Amiculum | A systematic evaluation of rare disease patient and caregiver involvement in European Joint Clinical Assessments |
| Maria Klapwijk | PLN Foundation | Headroom analysis for a Novel siRNA Therapy for PLN-R14del Cardiomyopathy |
| Marie Keetley | Unboxed Psychology | Understanding the Psychological Support Needs of People Affected by Head and Neck Cancer: A UK Community Survey |
| Marta Garcia Manrique | LABORATORIOS SERVIER, SL | Development of a BK channels modulator for the treatment of Fragile X Syndrome. |
| Maximillian Feld | Temedica | Rapid activation of a rare disease community: early results from an omnichannel patient engagement programme in Fabry disease in Germany |
| Michael Wilbur | MW Advocacy Solutions | Sustaining youth participation in rare disease: a cohort stewardship framework for insight, leadership and continuity |
| Michaela Fairley | Centre of Excellence CREATIC, Faculty of Medicine, Masaryk University | Hospital Exemption in the Czech Republic: Bridging ATMP Access Gaps for Rare Diseases |
| Michał Jachimowicz | MAHTA Sp. z o.o. | Navigating orphan drug reimbursement in Poland: why an end-to-end strategy matters |
| Nadine Ziegler | subrosa Health & Capital | The Patients Are There: Active Systematic Screening of Risk Populations Reveals Massive Diagnostic Under-Ascertainment Across Rare Genetic Diseases |
| Nathalie Vandevelde | Sciensano | Quality and efficiency of the biochemical diagnosis of rare diseases: How to turn a long odyssey into a clear map? |
| Peter Ashley | Cure Myotonic Dystrophy UK Charity (CureDM) | Myotonic Dystrophy in the UK: A Community Survey Gathering Patient-Reported Experiences and Preferences. |
| Ria de Haas | FSHD Europe | Project Mercury: 3-Year Progress Report on Global FSHD Trial Readiness and Patient Access |
| Roosmarijn De Cock | AIMS HEALTHCARE | A framework to build Sustainable Real-World Data Ecosystems for Rare Diseases: From Early Dialogue to Lifecycle Evidence Generation |
| Sandra Gavaldá | Olavide Neuron STX SL | The orphan drug LON 21 corrects brain steroid sulfatase overactivity and striatal mitochondrial dysfunction in the R6/1 mouse model of Huntington's disease |
| Shayanne Martin | Channeling Hope Foundation | Bridging families and scientists in Rare Disease: Consensus findings from the first NALCN family-scientist conference |
| Stefan Zivkovic | National Organisation for Rare Diseases of Serbia (NORBS) | SHARE-RD: Building a Stronger Rare Disease Ecosystem Through Evidence, Patient Empowerment and Cross-Sector Collaboration |
| Stephen Ralston | Coronado Research Ltd | ORPHAN CELL AND GENE THERAPY APPROVALS IN THE US AND EUROPE: A COMPARATIVE ANALYSIS |
| Tran Thomas | Aceso Therapeutics | ACT-101 : a breakthrough RNA therapy (ASO) for Cystic Fibrosis |
| Zaahira Gani Gensicke | FSHD Europe | Strengthening the European FSHD Ecosystem |
| Ellie Thomas | Camino Communications | Who’s asking? Persona framing changes the evidence AI assistants cite on sickle cell disease |
| Wilbert Bannenberg | Pharmaceutical Accountability Foundation | Human rights for patients to access repurposed orphan medicines and responsibilities of governments, pharmacists and pharmaceutical manufacturers |
| Nagy Habib | Dawn Therapeutics Ltd | Breaking Biological Barriers in Mucopolysaccharidosis Type I–Hurler Syndrome: Precision Delivery to the Brain, Joints and Cartilage |
| Thomas Kent | Texas A&M University Institute of Biosciences and Technology and Pleozyme Inc. | Pleozymes: A Novel Carbon Nanozyme for Rare Mitochondrial Disorders |
| Nawab Qizilbash | OXON Epidemiology | Beyond Approval: Designing External Controls for Orphan Drug Development and Market Access |
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