Please note that this agenda is preliminary and subject to change.
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 |
|---|---|
| 9:00am – 1:00pm | Registration |
| 1:00pm-3:45pm | Common Session |
| 3:45pm-4:15pm | Networking Break |
| 4:15pm-5:00pm | Welcome & Orientation for Families |
| 5:00pm-5:30pm | Common Session |
| 6:00pm-8:30pm | Get Together Party |
FRIDAY, JUNE 5TH
| Time | Session | Speakers |
|---|---|---|
| 8:30am-10:30am | TOPIC: Patient and Family Perspective | Moderators: F.Lagler & Rita Barone |
| 8:30am-9:00am | Mindfulness Workshop | Claire Garthwaite | Theta Healing – Marija Joldec | Dragana, Barbara Mamet |
| 9:00am-9:45am | Nothing About Us, Without Us: Listening to Lived Experience | Serena Gasperini, Nicole Muschol Patients and Patient Advocates (Mark Dant and Jill Woods) |
| 9:45am-10:15am | What Patient-Centered Care Looks Like in Real Life | Serena Gasperini, Nicole Muschol Patients and Patient Advocates (Jennifer Siedman) |
| 10:15am-10:30am | Q&A | |
| 10:30am-11:00am | Coffee Break | |
| 11:00am-1:00pm | TOPIC: Living with MPS: Mental Health, Transition and Quality of Life | Moderators: Hernan Amartino & Federica Deodato |
| 11:00am-11:30am | Mental Health, Resilience & Living with MPS | Julie Eisengardt Patients and Patient Advocates (MPS Adult Group) |
| 11:30am-12:15pm | Improving Quality of Life with MPS: Pain, Fatigue, Sleep, Cognitive Issues | Roberto Giugliani, Lucia de Zen Patients (MPS Adult Group), Patient Advocates, Parents |
| 12:15pm-12:45pm | Genetics, Family Planning & Life Decisions | F. Stewart & John Mitchell Patients (MPS Adult Group), Parents (Cristina Chiapetta) |
| 12:45pm-1:00pm | Q&A | |
| 1:00pm-2:00pm | Working Lunch | |
| 2:00pm-5:30pm | TOPIC: Living with MPS: Practical Care, Real Questions and Expert Answers | Moderators: Marta Solano & Michal Inbar-Feigenberg |
| Ask the Experts – Part 1 Interacive Session – Non- Neuronopathic Session | ||
| 2:00pm-2:20pm | Airway & Tracheal Care | Simon Jones |
| 2:20pm-2:40pm | Respiratory Health & Sleep | F. Luppi, Lucia De Zen |
| 2:40pm-3:10pm | Skeletal and Joint Issues | Andrea Borgo |
| 3:10pm-3:30pm | Open Q&A: What Families Want to Know | |
| 3:30pm-4:00pm | Coffee Break | |
| Ask the Experts – Part 2 Interactive Session- Neuronopathic Session | Moderators: Andrea Bordugo & Barbara Burton | |
| 4:00pm-4:20pm | Neurology | Hernan Amartino |
| 4:20pm-4:40pm | Vision & Hearing: Vision | Giacomo Bacci, Umut Akyol, Franco Trabalzini |
| 4:40pm-5:00pm | Holistic Care | Uma Ramaswami |
| 5:10pm-5:30pm | Open Q&A: What Families Want to Know | |
| 6:00pm-8:30pm | Remembrance Ceremony |
SATURDAY, JUNE 6TH
| Time | Session | Speakers |
|---|---|---|
| 9:00am – 9:30am | Family Dynamics & Caregiving – The Impact of MPS on the Whole Family | Fatama Al Jasmi, F. Deodato Parents, Siblings, Patients |
| 9:30am-10:00am | Living Independently with MPS: Practical Strategies for Daily Life | |
| 10:00am-10:30am | Patient Stories: Successes, Failures and everything in between | |
| 10:30am-11:00am | Break | |
| 11:00am-12:00pm | Siblings Workshop | |
| 11:00am-1:00pm | TOPIC: From Research to Reality: Therapies, Clinical Trials and What Families Need to Know | |
| 11:00am-11:30am | Current Treatments: Benefits, Limits and Real-World Experience | Chris Hendricsz & Faith Ezgu |
| 11:30am-12:00pm | Clinical Trials Explained: What Participation Means for Patients and Families | Roberto Giugliani, Simon Jones, Industry Partners |
| 12:00pm-12:45pm | Research Directions and Emerging Approaches | Patty Dickson, Industry Partners |
| 12:45pm-1:00pm | Q&A | |
| 1:00pm-2:00pm | Working Lunch- Bereavement and Anticipatory Grief Workshop | |
| FREE AFTERNOON |
SUNDAY, JUNE 7TH
| Time | Session | Speakers |
|---|---|---|
| 9:00am-9:30am | Newborn Screening – Early Diagnosis: Promise, Challenges and Ethical Considerations | M. Fueller, G. La Marca, Amy Gaviglio |
| 9:30am-10:00am | Global Regulatory and Reimbursement Disparities | Ashok Velodi, Salman Kirmani, Hernan Amartino, T. Okuyama, Industry Partners |
| 10:00am-10:30am | Data, Registries and Evidence – Why Data Matters for Patients and Policy | Ashok Velodi, Salman Kirmani, Hernan Amartino, T. Okuyama, Industry Partners |
| 10:30am-11:00am | Break | |
| 11:15am-End | FAMILIES SHARE THE CLOSING IN THE AUDITORIUM |