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26th and 27th AUGUST - RETREAT

SATURDAY/SUNDAY

TESTIMONIALS FROM LAST YEAR PARTICIPANTS

    • WHY DID I PARTICIPATE?
    • WHAT DID I LEARN?
    • WHY AM I HERE AGAIN?

TEAM BUILDING ACTIVITIES│ 9 AM - 6 PM

POOL - GUINCHO

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OTHER ACTIVITIES

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    • PSYCHOSOCIAL DIMENSION OF NF – MENTAL HEALTH

IN RARE DISEASES/NF│ INTERACTION │ WORKSHOP OFICINA DE PSICOLOGIA │ QUESTIONS

    • PROJECT FOR ADVANCED GROUP "PSYCHOLOGICAL IMPACT OF NF" WITH SUPPORTIVE PSYCHOLOGIST

28th AUGUST - MONDAY

VIP ART’S HOTEL (PARQUE DAS NAÇÕES)

OPENING - CLAAS RÖHL (9.30 AM)

WeARTolerance (2 - 5 PM)

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Oceanarium (last entry at 7pm, closes at 8pm)

+

TELECABINE (2-way or one-way trips; last trip at 8pm)

PARQUE DAS NAÇÕES

OTHER ACTIVITIES

    • SIGHTSEEING (Portuguese culture, history and landscape)

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29th AUGUST - TUESDAY - Sciences Faculty, Campo Grande

GENETICS & REPRODUCTION

    • DR. JULIETTE DUPONT & MARTA SOARES (10 AM)

Sciences Faculty

GENETICS

    • VISIT TO A MOLECULAR BIOLOGY LAB (1 PM - 4.30 PM)

“Meeting with the scientist!”

    • SIGHTSEEING (5 PM - 7 PM) ? (Portuguese culture, history and landscape) OR walk in the park, lake + boats

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Walk in the park

lake / boats

ceramics museum (Museu Bordalo Pinheiro (closes at 6pm)) ; Lisbon city museum (6pm);

Academy joint dinner

restaurant

Müla (8 PM)

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OTHER ACTIVITIES

lunch at the canteen

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30th AUGUST - WEDNESDAY

DR. JOÃO PASSOS, MD Portuguese NF specialist

(10 AM - 12 PM)

    • NF CLINIC & SCIENCE
    • SYMPTOMS IN YOUNG ADULTS
    • SURVEILLANCE
    • THERAPIES AVAILABLE
    • TUMOUR MANAGEMENT
    • CLINICAL TRIALS

VERENA STAEDTKE, MD, Ph.D

Associate Professor of Neurology

Johns Hopkins School of Medicine

(4 PM - 5 PM / ONLINE)

    • GENE THERAPY

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Martina Hagspiel (Kurvenkratzer)

Editor, creative, communicator,

patient advocate

(2 PM - 4 PM / ONLINE)

    • SOCIAL MEDIA COMMUNICATION

Pavilhão Chinês - Pub - Drinks

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OTHER ACTIVITIES

30th AUGUST - WEDNESDAY

LxFactory

OTHER ACTIVITIES

dinner: sr peixe

Alexion, NFPU+APNF

booked for 9 people

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31st AUGUST - THURSDAY

Claas Röhl

Walter Atzori, Susanne Burckhard - ALEXION

    • Patient Advocacy

APNF - Ana Elisabete Pires / Theo Fernandes / Alexandre Vaz

& EVITA - Tamara Milagre

    • Patient Advocacy

OTHER ACTIVITIES

Academy joint dinner

restaurant

‘Casa do Alentejo’

Portuguese food

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1st SEPTEMBER - FRIDAY

I WANT TO BE A NF AMBASSADOR - EUPATI

    • Presentation of group project “Psychological impact of NF”
    • Reflection of week, plans what to do as a NF ambassador
    • Diploma
    • Goodbye

zoom link for the organizations

DEPARTURE

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Suggestions

    • FADO in Chiado (reference price: 25.00€ per person)

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    • TUK-TUK (reference price: 20.00€ per person)

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    • HIPPOTRIP (reference price: 30.00€ per person)

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    • NO. 28 TRAM (reference price: 2.90€ per person / 1.45€ Viva Viagem card)

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    • AMOREIRAS PANORAMIC VIEW (reference price: 5€ per person)

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    • SMART SIGHTSEEING: private tours available - 1h - Lisbon - 350€ - until 18 people)