Sunday, Sept. 1st 2019

17:00Opening and Welcome by Hartmut Schmidt
(UKM Münster, Department of Gastroenterology and
Hepatology University Hospital Muenster)
17:00 – 21:00Get-together

Monday, Sept. 2nd 2019: Sessions 1 – 4 for Patients

07:30 Registration
08:30 – 10:00Session 1: Alliance activities
and Task force 1     
Chairs:  Koenraad Verhagen (Hilversum)
Open session: Round table with PO presentation
Summary overview of alliance activities since its creation, presentation, Jean-Christophe Fidalgo Alliance President & Françoise Pelcot , Alliance Director (France)
Task  Force One: Website Alliance, Tracey Deutsch and Dorien Muller
10:00 – 10:30 Coffee Break
10:30 – 12:00Session 2: Task forces 2 – 7
Chairs: Jean-Christophe Fidalgo (Marseille)
Task Force Two: Which medication available/not-available and accessible in which countries, Fabio Figuereido di Almeida
Task Force Three: Awareness and Diagnosis, Jean-Christophe Fidalgo
Task Force Four: Standard for Cure and Care, Carlos Heras-Palou 
Task Force Five : Research and Trials, Koenraad Verhagen (Netherlands)
Task Force Six : Advocacy, Giovanni d’Alessio
Task Force Seven : AL Amyloidosis, Ben Woltering
12:00 – 14:00Lunch Break
14:00 – 15:30Session 3
Chairs: Giovanni d’Alessio (Bologna)
New medicines and treatments combating hATTR polyneuropathy, David Adams, French Reference Center for FAP (NNERF) APHP (France)
New medicines and treatments combating cardiomyopathy, Julian Gillmore, University College London UK-National Amyloidosis Centre (UK)
Nutritional aspects, Anna HüsingKabar, Universitätsklinikum Münster Medizinische Klinik B
15:30 – 16:00 Coffee Break
16:00 – 17:30 Session 4General Assembly of the Alliance
Evening at the Bode Museum including a
tour and dinner (additional fee)

Monday, Sept. 2nd 2019: Sessions 5 – 7 for Doctors

08:30 – 10:00Session 5: Wildtype
ATTR amyloidosis – Where do
we stand?
Chairs: Rodney Falk, Julian Gillmore
Diagnosis and Epidemiology, Julian Gillmore, University College London UK-National Amyloidosis Centre (UK)
Real life monitoring of cardiac disease, Ali Yilmaz (Germany)
Therapeutic perspectives, Rodney Falk (USA)  
10:00 – 10:15 Coffee Break
10:15 – 11:45Session 6: Longterm
effect of disease modifying therapy in ATTR variants
Chairs: Matthias Schilling (Germany), Giampaolo Merlini (Italy)
Tafamidis, Marcia Waddington-Cuz (Brazil)
Patisiran, David Adams, French Reference Center for FAP (NNERF) APHP (France)
Inotersen and Beyond – A Comprehensive Antisense Therapeutic Strategy for all Forms of ATTR Sotirios Tsimikas, University of California (USA)
11:45 – 12:15Lunch Break

Lunch will be provided by Alnylam for attendees of the Symposium
12:15 – 13:45Symposium I: Lunch Symposium for doctors by Alnylam – How and When: An Expert Discussion on Management of hATTR AmyloidosisHarmut Schmidt, Universitätsklinikum Munster (Germany)
How can we capture the patient transition from asymptomatic to symptomatic and how do we evaluate the whole patient? Lucia Galan Davila, Clinico San Carlos (Spain)
How do we define disease progression for hATTR amyloidosis? David Adams, French Reference Center for FAP (NNERF) APHP (France)
What can we do to monitor disease progression in our patients? Fabian Knebel, Charité – Universitätsmedizin Berlin (Germany)
14:00 – 15:30Session 7: Limits in treating ATTR
Chairs: Marcia Waddington-Cuz (Brazil)
Opthalmologic, Antoine Rousseau, Assistance Publique Hôpitaux de Paris (France)
Cardiac, Ana Martinez-Naharro (UK)
Neurologic, Anna Mazzeo (Italy)
15:30 – 16:00Coffee Break
16:00 – 17:30Symposium II: Coffee Symposium for doctors by Akcea – Multidisciplinary care for hereditary ATTR amyloidosis: a 360 degree perspective
Chair: Giampaolo Merlini, University of Pavia, Italy
Diana Bonderman, Medical University of Vienna, Austria
Lucia Galan Davila, Clinico San Carlos, Spain
Harmut Schmidt, Universitätsklinikum Munster, Germany
Vince , United Kingdom (Patient)
Patient Advocate – tba
Theodora Weisz, Akcea Therapeutics, Switzerland
19:00Dinner Evening at the Bode Museum including a
tour and dinner (additional fee)

Tuesday, Sept. 3rd 2019: Sessions 8 – 11 for patients and doctors

07:30 Registration
08:30 – 10:00Session 8: Managing ATTR
Real life in
Chairs: K. Verhagen, J. Gillmore  
Read out doctors’ day, Julian Gillmore (UK) and David Adams, French Reference Center for FAP (NNERF) APHP (France)
Read out patients’ day, Carlos Heras-Palou (London)
Panel: Filling the gap between cure and care, Koenraad Verhagen (Netherlands), JC Fidalgo (France), Tatjana Weiss (Germany), Julian Gillmore (UK), David Adams, French Reference Center for FAP (NNERF) APHP (France)
10:00 – 10:30 Coffee Break
10:30 – 12:00Session 9: Identifying and caring of ATTR in the future
Chairs: JC Fidalgo, Ole Suhr
AG10 Update, Julian Gillmore (UK)
Gastroenterologic challenges including nutrition, Jonas Wixner, Public Health and Clinical Medicine (Sweden)
Strategies for identifying symptomatic patients, Hans Nienhuis, University Medical Center Groningen (Netherland)
ATTR in Bulgaria, Ivaylo Lyudmilov Tarnev (Bulgaria)
ATTR in Cyprus, Savanna Andreou, Cyprus Institute of Neurology and Genetics (Cyprus)
ATTR in Israel, Amir Dori, Sheba Medical Center, Tel-Aviv University (Israel)
ATTR epidemiology in Europe, Yeşim Gülşen Parman, Istanbul University (Turkey)
12:00 – 13:30Session 10
Chair: T. Coelho, Portugal
Tafamidis on the long term use in real life, Teresa Coelho (Portugal)
TTR stabilizer in cardiac patients,
C. Rapezzi (Italy)
14:00 – 15:30Session 11: When to treat – when to switch – when to stop
Chairs: D. Adams, H. Schmidt, J. Gillmore, I. Lousada
Neurological view, Yukio Ando, Nagasaki International University (Japan)
Cardiological view, Diana Bonderman (Austria)
Current status on ongoing studies in the field of amyloidosis, Isabelle Lousada, Amyloidosis Research Consortium (USA)
15:30 – 16:00 Coffee Break
16:00 – 17:30Session 12: Perspectives of amyloidosis centers: Implementing precisio medicine
Chair: Violaine Planté-Bordeneuve, University East Paris – Hospital Henri Mondor (France),
Isabelle Lousada, Amyloidosis Research Consortium  (USA)
Emerging diagnostics for earlier diagnosis: Genetic screening in ATTR amyloidosis, Laura Obici, Fondazione IRCCS Policlinico San Matteo (Italy)
The integration of data across Amyloidosis Expertise Centers, Fernando Exposto and Finlay MacDougall (IQVIA)
Accelerating diagnosis by innovative Health Technology, Edmund Drague and Finlay MacDougall (IQVIA)
CRISPR-Mediated Therapy for Amyloidosis, Mark McKee, Vice President, Clinical Development Intellia Therapeutics (UK)
Panel: Managing an Amyloidosis Expert Centre – Which disciplines? Reimbursement? Referrals? Prescriptions? Home Care?

Wednesday, Sept. 4th 2019

08:30 – 12:45: Workshop for patients: How to start and mature a Patient Organisation by PASComp ( Patients Associations Support Company)

08:30 – 10:00: Steps to set up a patient association (PASComp)
10:00 – 10:15: Break
10:15 – 10:45: How to use social media (Theodora Weisz)
10:45 – 11:00: Break
11:00 – 11:45: How to mature a patient association (PASComp)
11:45 – 12:00: Break
12:00 – 12:45: Fundraising issues and ideas (PASComp)