PROGRAM JULY 5

Friday, July 5 – Doctors, click HERE to consult the program

PATIENTS ASSOCIATIONS CHANNEL

08:00 – 08:30 am

Registration – Welcome coffee I Visit exhibit

08:30 – 09:00 am

Amyloidosis Alliance introduction and actions

Jean-Christophe Fidalgo

09:00 – 10:45 am

Session 1 / Diagnosis improvement and 2024 critical point

Chairmen: Roland Drewinski (Germany), Olivier Lairez (Toulouse, France)

09.00 Diagnosis: patients journey testimonies in different countries

09.30 How to reduce time to diagnosis in 2024?

Nathalie Meuleman (Brussels, Belgium)

09:50 How to improve the accurate diagnosis in 2024?

Christoph Röcken (Kiel, Germany)

10:10 Multidisciplinary approach for improving the diagnosis?

Olivier Lairez (Toulouse, France)

10:30 Discussion

10:45 – 11:15 am Coffee break I Visit exhibit

11:15 am – 01:00 pm

Session 2 // Medical care and symptoms treatment

Chairmen: Thibaud Damy (Créteil, France), Helen Lachmann (London, GB)

11:15 Kidney

Lluis Quintana (Barcelona, Spain)

11:30 Others (malnutrition, macroglossia, dysgeusia)

Ornella Rizzo (Brussels, Belgium)

11.45 Dialysis

Anne-Lorraine Clause (Brussels, Belgium)

12.00 Cardiac

Christian Knackstedt (Maastricht, The Netherlands)

12.15 Peripheral nervous system

Michela Bisciglia (Brussels, Belgium)

12.30 Discussion

01:00 – 02:30 pm Lunch time

02:30 – 03:00 pm

Industry symposia

03:00 – 04:30 pm

Session 3 /// Importance of self-care: physical, mental and emotional wellbeing

Chairmen: Ric-Paul Hammink (Amyloidosis Alliance, The Netherlands), Barbara Mazzolini (Association Frrançaise contre l’Amylose)

03:00 Complementary treatments: the French experience

Julie Pompougnac (Créteil, France)

03:15 Kinesiology / Music therapy

Audrey Norris, Barbara Mazzolini (Association Française contre l’Amylose)

03:30 Dietetic and environment during and after the treatment

Marianna Arvanitaki (Brussels, Belgium)

03:45 Physical training for amyloidosis patients during the treatment

Benjamin Depoorter (Brussels, Belgium)

04:00 Role of patient’s organisation and care givers

David Gregory (The Ukpata, Great Britain)

04:15 Discussion

04:30 – 05:00 pm Coffee break I Visit exhibit

05:00 – 06:00 pm

Session 4 //// Return to normal life after treatment

Chairmen: Agnès Farrugia (Association Française contre l’Amylose), Guy Lippens (Amybel, Belgium)

05:00 Vaccines and prevention

Ornella Rizzo (Brussels, Belgium)

05:15 Muscular rehabilitation and sport

Julien Mathias (Association Française contre l’Amylose)

05:430 Discussion

06:00 – 06:45 pm

Session 5 ///// Return to work

Chairmen: Barbara Mazzolini (Association Française contre l’Amylose), Ben Woltering (Amyloidosis Alliance, The Netherlands)

06:00 Testimonies: return to work share experience

06:15 Round table – Return to the same work? How to adapt work and manage fatigue?

With the participation of: Teresa Deutsch, (Amyloidosis Support Groups USA), Julien Mathias (Association Française contre l’Amylose), Julie Pompougnac (Créteil, France)