Progress report



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Annex 1

Overview of meetings where the Network was/will be presented or mentioned


Presentations focusing on the Action/discussing the Action (for at least 5 minutes)
Presenter: Annemieke Aartsma-Rus

Date: 15-17 April 2013

Location: Dublin, Ireland

Meeting: International conference of the International Rare Disease Research Consortium (IRDiRC)

Audience type: Scientists, clinicians and patient representatives

Audience size: ~ 300

Title talk: Antisense-mediated exon skipping – Applying lessons learnt from Duchenne muscular dystrophy to other rare diseases
Presenter: Annemieke Aartsma-Rus

Date: 17 May 2013

Location: Salt Lake City, Utah, USA

Meeting: ASGCT satellite meeting of the Gene and Cell Therapy Consortium

Audience type: Scientists and clinicians

Audience size: ~100

Title talk: Networking – the TREAT-NMD paradigm
Presenter: Annemieke Aartsma-Rus

Date: 13 Sept 2013

Location: Leiden, the Netherlands

Meeting: Gene therapy workshop of the Dutch Organisation of Bone Marrow Transplantation

Audience type: scientists and clinicians

Audience size: ~150

Title talk: Opportunities of antisense-mediated exon skipping
Presenter: Virginia Arechevala-Gomeza

Date: 16-19 October 2013

Location: San Sebastian, Spain

Meeting: International Myotonic Dystrophy Consortium

Audience type: Scientists and Clinicians

Audience size: ~200-300

Title poster: Networking towards clinical implementation of antisense-mediated exon skipping
Presenter: Annemieke Aartsma-Rus

Date: 23-26 October 2013

Location: Turin, Italy

Meeting: Rare Disease symposium of the Italian Pharmacological Society

Audience type: Pharmacologists

Audience size: ~100

Title talk: Antisense-mediated exon skipping – a therapeutic approach with potential for DMD and other rare diseases
Presenter: Annemieke Aartsma-Rus

Date: 29 October – 1 November

Location: Newcastle, UK

Meeting: TREAT-NMD symposium

Audience type: Scientists, clinicians, industry representatives, patient representatives

Audience size: ~ 300-400

Title talk: Joint research and regulatory interaction
Presenter: Annemieke Aartsma-Rus

Date: 17 December 2013

Location: Bonn, Germany

Lecture: Leiter des Schwerpunkts Klinische Neuroonkolgie Lecture

Audience type: Clinicians and scientists

Audience size: ~ 100

Title talk: Antisense-mediated exon skipping for Duchenne muscular dystrophy and other neurological disorders
Presenter: Annemieke Aartsma-Rus

Date: 21-23 February 2014

Location: Rome, Italy

Meeting: Italian Duchenne Parent Project Onlus

Audience type: parents, patients, scientists, clinicians, industry representatives

Audience size: ~400

Title talk: Preclinical exon skipping studies
Presenter: Annemieke Aartsma-Rus

Date: 24-26 February 2014

Location: Heidelberg, Germany

Meeting: RD-Connect, NEUROMICS and EURENOMICS joint progress meeting

Audience type: scientists, clinicians

Audience size: ~500

Title talk: Antisense-mediated exon skipping for DMD and other rare diseases
Presenter: Annemieke Aartsma-Rus

Date: 13-14 March 2014

Location: Lunteren, the Netherlands

Meeting: Annual meeting of the Dutch Society of Gene and Cell Therapy

Audience type: clinicians, scientists, industry representatives

Audience size: ~ 100

Title talk: Antisense-mediated exon skipping: An approach with therapeutic potential for DMD and other diseases
Presenter: Annemieke Aartsma-Rus

Date: 27-28 March 2014

Location: Porto, Portugal

Meeting: Genetics Conference

Audience type: geneticists

Audience size: ~200

Title talk: Antisense-mediated exon skipping for Duchenne muscular dystrophy – clinical trials and beyond
Presentations mentioning the Network
The Network was also mentioned during the Oligonucleotide Therapeutics Society meeting (6-9 October 2013, Naples Italy) by Mike Gait when he chaired a session. He also mentioned the opportunity for people to join the Action (resulting in Denmark signing up).
Presenter: Francesco Muntoni

Date: April 21-24 2013

Location: Washington DC, US

Meeting: Muscular Dystrophy Association Scientific Conference

Audience type: scientists, clinicians and patient representatives

Audience size: ~500

Title talk: What we have learned from clinical trials to date
Presenter: Annemieke Aartsma-Rus

Date: April 24 2013

Location: Washington DC, US

Lecture at Children’s National Medical Center

Audience type: scientists and clinicians

Audience size: 100

Title presentation: the development of antisense-mediated exon skipping for DMD
Presenter: Willeke van Roon-Mom

Date: 11-13 June 2013

Location: Paris, France

Meeting: SPATAX

Audience type: scientists, clinicians and patients

Audience size: 200

Title presentation: Using antisense oligonucleotides to reduce or modify the disease causing proteins in autosomal dominant spinocerebellar ataxis
Presenter: Annemieke Aartsma-Rus

Date: August 22 2013

Location: Tanjin University, China

Lecture at Tanjin University

Audience type: scientists

Audience size: 20

Title presentation: Antisense-mediated exon skipping for DMD
Presenter: Lourdes Desviat

Date: September 3-6 2013

Location: Barcelona, Spain

Meeting: International Congress of Inborn Errors of Metabolism

Audience type: Scientists and Clinicians

Audience size: ~500

Title poster presentation: In vivo effect of splice modulating antisense oligonucleotides: generation of hyperphenylalaninemia mice as model
Presenter: Zaida Koeks

Date: 7 September 2013

Location: Veldhoven, the Netherlands

Meeting: Muscle Congress of the Dutch Neuromuscular Patient Organisation

Audience type: Patients and parents

Audience size: ~80

Title talk: Overview of medication trials in Duchenne muscular dystrophy
Presenter: Francesco Muntoni

Date: 30-31 October 2013

Location: Newcastle UK

Meeting: TREAT-NMD symposium

Audience type: Scientists, clinicians, industry representatives, patient representatives

Audience size: ~ 300-400

Title talk: Emerging therapies for SMA
Presenter: Francesco Muntoni

Date: 1-2 November 2013

Location: Athens, Greece

Meeting: Mediterranean Society of Myology

Audience type: Scientists, clinicians

Audience size: ~ 200

Title talk: Genetic therapies in muscular dystrophies
Presenter: Annemieke Aartsma-Rus

Date: November 7 2013

Location: Helsinki, Finland

Meeting: Annual meeting of the Finish Society of Pediatric Neurology in memory of Martha Donner

Audience type: Clinicians

Audience size: ~ 200

Title talk: Preclinical development of antisense-mediated exon skipping for DMD and other neurologic diseases
Presenter: Annemieke Aartsma-Rus

Date: November 20-22 2013

Location: Cardiff, UK

Meeting: Cardiovascular genetics symposium

Audience type: Cardiologists, clinical geneticists

Audience size: ~ 400-500

Title talk: Antisense-mediated exon skipping for Duchenne muscular dystrophy
Presenter: Annemieke Aartsma-Rus

Date: January 11, 2014

Location: Chennai, India

Meeting: Myocon

Audience type: clinicians, researchers, parents

Audience size: ~ 200-300

Title talk: Future directions of antisense-mediated exon skipping for Duchenne muscular dystrophy
Presenter: Lourdes Desviat

Date: May 20-24 2014

Location: Washington DC USA

Meeting: American Society of Gene and Cell Therapy

Audience type: Scientists and Clinicians

Audience size: ~1000



Title oral or poster presentation: A sensitive assay system to test antisense oligonucleotides for splice suppression therapy in mouse
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