Explore our IMPS Patient Associations program agenda, featuring sessions designed to address the unique needs of families and caregivers. From informative workshops to interactive discussions, the program fosters support, education, and empowerment.
THURSDAY, JUNE 4TH
| Time | Session | Speakers |
|---|---|---|
| 9:00am-5:00pm | Registration | |
| 12:30pm | Press Conference | Kim Angel, Maurizio Scarpa, Flavio Bertoglio, Authorities |
| 1:00pm-2:00pm | Opening Address and Welcome | City of Florence, Tuscany Region. Local authorities and EU |
| 2:00pm-2:45pm | Opening Address | Kim Angel, Maurizio Scarpa, Flavio Bertoglio |
| 2:45pm-3:15pm | Back 20 Years, Looking to Next 20: A Vision for the MPS Community | Joseph Muenzer |
| 3:15pm-3:45pm | Progress in Curing Patients: reflecting on 20 years of breakthroughs Improvements in Patient Care and Management Impact of Clinical Trials on Treatment Outcomes Challenges and Solutions in Patient Access to Therapies | Patti Dickson |
| 3:45pm-4:15pm | Networking Break | |
| 4:15pm-4:45pm | Welcome & Orientation for Families | |
| 5:00pm-5:30pm | Keynote presentation: Progress in Curing Patients: reflecting on 20 years of breakthroughs Improvements in Patient Care and Management Impact of Clinical Trials on Treatment Outcomes Challenges and Solutions in Patient Access to Therapies | Paul Harmatz |
| 6:00pm-8:30pm | Welcome to Italy Reception – Garden Area |
FRIDAY, JUNE 5TH
| Time | Session | Speakers |
|---|---|---|
| TOPIC: Patient and Family Perspective | Moderators: Florian Lagler, Rita Barone, Bob Stevens | |
| 8:30am-10:00am | Nothing About Us, Without Us: What Patient-Centred Care Looks Like in Real Life and Listening to Lived Experience | Serena Gasperini, Nicole Muschol, Mark Dant, Jill Wood, Jennifer Siedman |
| 10:00am-10:30am | Transition in Lysosomal Storage Diseases: Challenges, Strategies and Patient Empowerment
Toolkit Workshop Intro | Karolina Stepien, Adrian Toggenburger, Jocelyn Wong |
| 10:30am-10:45am | Q&A | |
| 10:45am-11:00am | Coffee Break w/ Exhibitors | |
| TOPIC: Living with MPS: Mental Health, Transition and Quality of Life | Moderators: Hernan Amartino, Federica Deodato, Terri Klein | |
| 11:00am-11:30am | Mental Health, Resilience & Living with MPS | Julie Eisengart |
| 11:30am-12:15pm | Improving Quality of Life with MPS: Pain, Fatigue, Sleep, Cognitive Issues | Roberto Giugliani, Lucia de Zen |
| 12:15pm-12:45pm | Genetics, Family Planning & Life Decisions | Fiona Stewart, John Mitchell |
| 12:45pm-1:00pm | Q&A | |
| 1:00pm-2:00pm | Working Lunch – Transition to Adulthood Toolkit | Adrian Toggenburger, Rachel Siew, Jocelyn Wong |
| TOPIC: Living with MPS: Holistic Care, Real Questions and Expert Answers | Moderators: Martha Solano, Uma Ramaswami | |
| Ask the Experts – Part 1 Interactive Session | ||
| 2:30pm-3:45pm | WORKSHOP: Theta healing (Healing the loss) This workshop offers a safe and supportive space for persons who have experienced the loss of a beloved MPS family member. Together, we will gently explore the emotions connected with grief and how loss can affect both the body and mind. Using the Theta Healing technique, we will practice healing exercises designed to bring comfort, inner peace, and emotional release, while supporting the journey toward renewed strength, meaning, and purpose in life. | Marija Kuzmin |
| 2:00pm-2:20pm | Airway & Tracheal Care | Simon Jones |
| 2:20pm-2:40pm | Respiratory Health & Sleep | Fabrizio Luppi, Lucia De Zen |
| 2:40pm-3:00pm | Skeletal & Joint Issues | Andrea Borgo |
| 3:00pm-3:15pm | Open Q&A: What Families Want to Ask | |
| 3:15pm-3:45pm | Coffee Break w/ Exhibitors | |
| Part 2 Living with MPS: Holistic Care, Real Questions and Expert Answers | Moderators: Andrea Bordugo, Barbara Burton | |
| 4:00pm-5:00pm | WORKSHOP: Refined Pilates with Barbara In these workshops you will learn the very basic technique in Pilates which is how to breath deeply and fully. – how to utilize our breath as a natural remedy against tension, pain and stress. We will learn how through the richness of our breath, we can get stronger, healthier and happier. | Barbara Mamatis |
| 3:45pm-4:05pm | Neurology, Vision & Hearing | Hernan Amartino |
| 4:05pm-4:25pm | Ophthalmology | Giacomo Bacci |
| 4:25pm-4:45pm | Ear, Nose, Throat | Umut Akyol |
| 4:45pm-5:15pm | Holistic Care | Uma Ramaswami |
| 5:15pm-5:30pm | Open Q&A: What Families Want to Know | |
| 6:00pm-8:30pm | Meet Our Stars Reception (Remembrance Ceremony) – Garden Area |
SATURDAY, JUNE 6TH
| Time | Session | Speakers |
|---|---|---|
| TOPIC: Daily Life, Therapy, Independence & Participation | Moderators: Dragana Miletic Lajko, Hanka Dekker, Martha Solano | |
| 9:00am-9:20am | Family Dynamics & Caregiving – The Impact of MPS on the Whole Family | Fatma Al Jasmi, Federica Deodato |
| 9:20am-9:40am | Living Independently with MPS: Practical Strategies for Daily Life | Vanessa Ede-Scott |
| 9:40am-10:15am | My Journey: Successes, Failures and everything in between | Gian Franco Catania, Jenny Jackson, Jibreel Arshad |
| 10:15am-10:30am | Q&A | |
| 10:30am-11:00am | Coffee Break w/ Exhibitors | |
| 10:30am-11:45am | WORKSHOP: Theta healing (Managing the stress) Stress is something we all know well, especially within MPS families and in these uncertain times. Learning how to stay grounded and centered through it all is a powerful skill. In this workshop, you will learn how to relax your body and calm your mind using the Theta Healing technique. We will explore how suppressed emotions such as fear, guilt, anger, and sadness can affect the body, and you will learn gentle techniques to release them, creating more balance, peace, and ease in your life. | Marija Kuzimin, Dragana Miletic Lajko |
| TOPIC: From Research to Reality: Therapies, Clinical Trials and What Families Need to Know | Moderators: Christina Lampe, Jordi Cruz | |
| 11:00am-11:30am | Clinical Trials Explained: What Participation Means for Patients and Families | Roberto Giugliani, Simon Jones |
| 11:30am-12:00pm | Current Treatments: Benefits, Limits and Real-World Experience | Chris Hendriksz, Fatih Ezgü |
| 12:00pm-12:30pm | Research Directions, Emerging Approaches and Viral Vector Based Gene Therapies | Patti Dickson, Scott Loiler |
| 12:30pm-12:45pm | Q&A | |
| 12:00pm-1:00pm | WORKSHOP: Refined Pilates with Barbara In these workshops you will learn the very basic technique in Pilates which is how to breath deeply and fully. – how to utilize our breath as a natural remedy against tension, pain and stress. We will learn how through the richness of our breath, we can get stronger, healthier and happier. | Barbara Mamatis |
| 1:00pm-2:00pm | BioMarin Sponsored Workshop: Living with MPS: Honest stories of challenge, resilience and hope | Rachel Siew, Alexia Brandau, Archie Eaton
Moderator: Christina Lampe |
| 2:00pm-3:00pm | WORKSHOP: Game Jam: From Idea to Paper Have you ever wanted to create your own video game? In this workshop you’ll design your very own game from scratch, racing against the clock. No computer needed, just paper and your imagination! | Gian Franco Catania |
| 2:00pm | FREE AFTERNOON | |
| 6:30pm-9:00pm | Networking Reception & Dinner – Stanzione Leopolda |
SUNDAY, JUNE 7TH
| Time | Session | Speakers |
|---|---|---|
| TOPIC: A Global Perspective on MPS: Equity, Access and the Path Forward to Early Detection, Access to therapies and Clinical Trials | Moderators: Leonardo Calzetti, Eda Selebatso | |
| 9:00am-9:05am | Moderator Introduction | Leonardo Calzetti, Eda Selebatso |
| 9:05am-9:40am | Newborn Screening – Early Diagnosis: Promise, Challenges and Ethical Considerations (panel) | Maria Fuller, Giancarlo la Marca, Matthew Ellinwood, Bob Stevens |
| 9:40am-10:15am | Global Regulatory and Reimbursement Disparities | Hernan Amartino, Scott Loiler, Zsuzsanna Almássy |
| 10:15am-10:45am | Data, Registries and Evidence – Why Data Matters for Patients and Policy (Presentation) | Chris Hendriksz |
| 10:45am-11:00am | Q&A | |
| 11:00am-11:15am | Closing Reflections & Farewell: A heartfelt close to our family session as we come together with love, hope, encouragement, and inspiration for the journey ahead. | |
| 11:00am-End | Families Share the Closing – Congressi Auditorium |