Events

4th RUBICON webinar

Title:”An In Silico Approach to find the missing heritability for Achilles tendinopathy and anterior cruciate ligament ruptures”
Speakers: Prof. Alison September and Dr. Colleen Saunders, University of Cape Town, South Africa
Date and time: Tuesday, September 19th 2017, 14:00 CEST

If you would like to attend, please contact us for further information.

2nd RUBICON annual symposium

Our annual symposium and mid term review meeting was held in Salzburg, May 16-17, immediately after the ECTS 2017 congress. The symposium, open also to ECTS delegates, featured presentations from Charles O’Brien, Paul Baldock and Danny Chan.

Salzburg view

3rd RUBICON Webinar

Title: “In vivo and ex vivo analyses of mutant mice”
Speaker: Prof. Francesco Ramirez, Department of Pharmacology and Systems Therapeutics, Icahn School of Medicine at Mount Sinai, New York, USA
Date and time: Friday, March 31st 2017, 14:30 CEST

The slides from the webinar will be available on the website shortly.

Rare Disease Day 2017

To mark Rare Disease Day 2017, 15 patient families (over 60 people) from Little People of Hong Kong visited Faculty of Medicine, the University of Hong Kong for a tour of our RUBICON network partner Prof. Danny Chan’s skeletal lab.

Members of the lab set up six interactive stations to illustrate their research into bone diseases. LPHK members were shown GFP mice, super regenerative planaria worms, and GFP chick embryos. Also, the university staff explained the workflow of disease research, from mutation identification to generation of disease model and ultimately the understanding of pathology and development of potential drugs.

The event ended with a patient sharing session and a party.

This event was reported by more than five local media publications, which is very encouraging, and raises the awareness of rare diseases in Hong Kong.

HKU RDD 2017

1st RUBICON Annual Symposium

The 1st RUBICON Annual Symposium was held in Athens, Greece, on June 14th-15th 2016, alongside the 2nd Matrix Biology Europe (MBE) Conference.

Athens_group

Rare Disease Day, February 29th 2016

RUBICON participants Newcastle University (UNEW) and Hong Kong University (HKU) are contributing to public events for Rare Disease Day 2016.

Voicesforequality poster
HKU is working with the charity Little People of Hong Kong, which aims to help rare bone disease patients to live an independent and fulfilling life by overcoming challenges associated with their physical difference.  The HKU group has produced a booklet “Little but not less: Understanding bone disorders” which was launched at a public event “Voices for Equality” held at HKU on February 20th to promote International Rare Disease Day 2016.

More than 130 people including patients and their families, teachers and volunteers attended. HKU’s Danny Chan spoke at the event, and group students and postdocs made Chinese sweet dumplings with the children. The event also features the Children’s Choir of Music Children Foundation, another charitable organisation that serves children from deprived families. Some pictures can be downloaded here (pdf file).

UNEW hosted the popular Genetics Matters event again on February 27th 2016 as part of the international Rare Disease Day.

The “Genetics Matters” annual event serves to showcase genetic research and to give the patient and charity organisations a voice and a platform to interact with the members of general public. The theme of the Rare Disease Day in 2016 is “Patient Voice”, recognising the crucial role that patients play in research by voicing their needs and instigating change.
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