7th International Symposium on NBIA and related disorders

Register now!! The 7th international NBIA symposium will take place from October 1st to 3rd, 2020 in Lausanne, Switzerland. For three days, scientists and medical professionals from all over the world are invited to share their work and develop new strategies. Learn news from NBIA research! Share your experience in treating NBIA and take part in round table discussions!

Please read carefully the General Terms and Conditions

Registration fees:


Early registration

Before June 1 2020

(in CHF)

Standard registration

Between June 1  and September 1 2020

(in CHF)

Regular attendee



NBIA alliance members/ Patient organization representative**



Patient organization representative



Students/Postgraduate Trainees






* A verification will be performed by our conference secretariat to validate your participation.

** Please provide by e-mail a confirmation signed by the head of the organization at the moment of your registration. Confirmations handed in at a later stage cannot be considered.

Prices are in CHF if you choose to register by bank wire (payment has to be received within 10 days, be careful to cover the bank expenses).

If you choose to pay by credit card (1 Euro =~ 1.00 CHF; +5% fee).


Methods of Payment

Payment should be made in Swiss Franc (CHF) only. Because of the Corona crisis payment will be later when the situation is clear for October. 

Bank Transfer: Attendees should complete the relevant section of the Registration Form.

Beneficiary: NBIA symposium, NBIA Suisse, Lausanne/ Switzerland

Bank: Banque cantonal Vaudois, Place St. Francois, Lausanne/Switzerland


IBAN: CH34 0076 7000 R547 2470 5

Please note that all transfer costs shall be prepaid by the sender. Cheques will not be accepted.


Letter of Confirmation/Payment Receipt

An email of confirmation/payment receipt will be sent by email once the NBIA Suisse Symposium Secretariat has received the fully completed registration form and the related payment. Attendees must present this confirmation/payment receipt at the registration counter as proof of their registration and payment

The registration fee includes:

  • Access to all sessions
  • Endless opportunities to network with colleagues from around the globe
  • Thursday dinner at Mövenpick
  • Complimentary lunch
  • Complimentary daily morning coffee breaks
  • Complimentary daily afternoons coffee breaks
  • The Friday Social Event on a steamer on the lake
  • Symposium Program Guide and Abstract Book

The event takes place at two locations in Lausanne, Switzerland:

October 1st:

Hotel Mövenpick

4, Avenue de Rhodanie, CH-1000 Lausanne, Switzerland

October 2nd and 3rd:

Lausanne University Hospital, Charlotte Olivier auditorium

Rue du Bugnon 21, CH-1011 Lausanne, Switzerland

Mövenpick Hotel Lausanne:

Mövenpick Hotel Lausanne is on the waterfront of Lake Léman (also known as Lake Geneva); means guests are also surrounded by stunning views of the lake and the Alps. This 4-star hotel is located in the heart of Lausanne-Ouchy, within close proximity of Olympic Museum and Lausanne Historical museum, just a two-minute drive from the city centre, the main railway station and the motorway (2 km). Geneva-Cointrin International Airport (GVA) is only a 45-minute drive away.

We have negotiated special rates for you at the Mövenpick Hotel. Please register here to book your room to benefit of a discount during the symposium.

How to get there:

Airport Geneva airport train station -> Lausanne train station (45 minutes) -> 3 minutes walk to the subway station Gare -> Ouchy (5minutes) -> 200m to the hotel.


Lausanne University Hospital (CHUV):

Lausanne University Hospital is one of the five university hospitals in Switzerland, with Geneva, Bern, Basel and Zurich. With its 16 clinical and medico-technical departments and their numerous services, the CHUV is renowned for its academic achievements in health care, research, and teaching.

The CHUV is also a well-known center of medical education and research thanks to its collaboration with the Faculty of Biology and Medicine of the University of Lausanne and the Swiss Federal Institute of Technology in Lausanne (EPFL). Together, these institutions form a vast campus in the Lake Geneva region.

How to get there:

  • By train from Lausanne railway station (10 minutes)
  • From Hotel Mövenpick Lausanne, Ouchy metro station (15 minutes)
    Take Metro M2 going to “Croisettes” and get off at “CHUV”


Lausanne is a city on Lake Geneva, in the French-speaking region of Vaud, Switzerland. It’s home to the International Olympic Committee headquarters, as well as the Olympic Museum and lakeshore Olympic Park. Away from the lake, the hilly old city has medieval, shop-lined streets and a 12th-century Gothic cathedral with an ornate facade. The 19th-century Palais de Rumine houses fine art and science museums.

Along the shores of Lake Geneva (Lac Léman in French), there are hiking and biking paths, as well as picnic areas. On the lake itself, summer is a popular time for sailing, fishing and boat tours. Lausanne’s historic marina district, Ouchy, has parks, cafes and a busy port with steamers linking Lausanne to destinations such as Evian, France, Montreux (home to jazz festival Montreux) and Vevey (Charlie chaplain manor) .The city’s Flon quarter is a revitalized warehouse district with an avant-garde feel, known for chic shops and nightlife. Sauvabelin Forest is a park that’s home to a small lake and a tower with panoramic views. To the east of town are the terraced vineyards of Lavaux.

If you wish to visit the night watchman at the mediavial cathedral, Thursday night, or to buy chocolate at maître chocolatier Olivier Fuchs, you can mention it in the register form, so we can book your visit there.

Video: What do to in Lausanne!

Once you are in Montreux, the experience of a view on the Swiss Alps is a must. Glacier 3000, located at the highest point of the Vaudois Alps and the Peak Walk, a unique suspension bridge linking two mountain peaks at 3000 meters over the see level.

Confirmed speakers and topics:

Pantothenate Kinase-Associated Neurodegeneration (PKAN)

Susan Hayflick

Portland, USA

Pathomechanisms in PKAN – state of the art

Ivan Karin

Munich, Germany

Phenotype and natural history of PKAN – the TIRCON cohort

Allison Gregory

Portland, USA

Phenotype and natural history of PKAN – the OHSU colllaborative cohort and PKANready

Penny Hogarth

Portland, USA

CoA-Z design & status of trial

Ody Sibon

Groningen, Netherlands

CoA pathomechansims and overlap to other disorders

Thomas Klopstock

Munich, Germany

Things to learn from the completed deferiprone and fosmetpantotenate trials in PKAN

Suzanne Jackowski

Memphis, USA

A novel therapeutic approach in PKAN – pantazines

Suh Young Jeong

Portland, USA

Status of gene therapy in PKAN

Patricia Wood & Angelika Klucken

El Cajon, USA &

Düsseldorf, Germany

Patients` perspective in PKAN

CoA synthase protein-associated neurodegeneration (CoPAN)

Ivano Di Meo

Milan, Italy

Inborn errors of CoA: implementation of new disease models

Giovanna Zorzi

Milan, Italy

CoPAN: clinical aspects

Ivan Gout

London, UK

Protein CoAlation and antioxidant function of coenzyme A in neurodegeneration

Beta-propeller protein-associated neurodegeneration (BPAN)

Hong Zhang

Beijing, China

Mouse model of BPAN

Mario Mauthe

Groningen, Netherlands

Autophagy involvement in BPAN

Allison Gregory

Portland, USA

Natural history of BPAN and BPANready

Markus Nielbock

Düsseldorf, Germany

Patients` perspective in BPAN

Mitochondrial-membrane Protein-Associated Neurodegeneration (MPAN)

Arcangela Iuso

Munich, Germany

MPAN: from basic mechanism to a potential therapeutic approaches (Drosophila)

Suh Young Jeong

Portland, USA

Autosomal dominant inheritance in MPAN

Tomasz Kmiec

Warszaw, Poland

Clinical features of MPAN

Marta Skowonska

Warszaw, Poland

The MPAN scale

Susanne Schneider

Munich, Germany

Natural history of MPAN

Miguel Sena Esteves

Boston, USA

Gene therapy for MPAN

Maciej Cwyl

Warszaw, Poland

Patients` perspective in MPAN

PLA2G6-associated neurodegeneration (PLAN) incl. infantile neuroaxonal dystrophy (INAD)

Ahad Rahim              

London, UK

Gene therapy in a mouse model of INAD

Manju Kurian

London, UK

Preparing a clinical gene therapy trial in INAD – state of the art

Allison Gregory

Portland, USA

Natural history of PLAN, PLANready and the UK retrospective study

Fatty Acid Hydroxylase-associated Neurodegeneration (FAHN)

Sunita Venkateswaran

Toronto, Canada

Phenotype and natural history in FAHN

General topics in Neurodegeneration with Brain Iron Accumulation (NBIA)

Sonia Levi

Milan, Italy

Brain iron metabolism: implication for aging and neurodegeneration

Agnes Rötig

Paris, France

Abnormal regulation of transferrin receptor in NBIA

Randy Wolter

Portland, USA

Insights from Pathology of the NBIA Disorders

  • Ivan Di Meo, Milan (Italy)
  • Miguel Sena Esteves, Boston (US)
  • Ivan Gout, London (GB)
  • Allison Gregory, Portland (US)
  • Susan Hayflick, Portland (US)
  • Penny Hogarth, Portland (US)
  • Arcangela Iuso, Munich (Germany)
  • Suzanne Jackowski, Memphis (US)
  • Suh Young Jeong, Portland (US)
  • Ivan Karin, Munich (Germany)
  • Thomas Klopstock, Munich (Germany)
  • Angelika Klucken, Dusseldorf (Germany)
  • Tomasz Kmiec, Warszaw (Poland)
  • Kurian Manju, London (GB)
  • Sonia Levi, Milan (Italy)
  • Maciej Cwyl, Warszaw (Poland)
  • Mario Mauthe, Groningen (Netherlands)
  • Fatemeh Mollet, Lausanne (Switzerland)
  • Markus Nielbock, Dusseldorf (Germany)
  • Rahim Ahad, London (GB)
  • Agnes Rötig, Paris (France)
  • Suanne Schneider, Munich (Germany)
  • Odi Sibon, Groningen (Netherlands)
  • Marta Skowonska, Warszaw (Poland)
  • Tiranti, Milan (Italy)
  • Sunita Venkateswaran, Toronto (Canada)
  • Randy Wolter (US)
  • Patricia Wood, El Cajon (US)
  • Zhang Hong, Beijing (China)
  • Giovanna Zorzi, Milan (Italy)

A big THANK YOU to our sponsors for this event!


GOLD Sponsor

  • Retrophin


SILVER Sponsor

  • Apopharma



  • CoA Therapeutics
  • Hoffnungsbaum
  • Eurodis

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General Terms & Conditions