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RareX Organising Parties

Rare Diseases Conference 2016 featuring the 11th ICORD Annual Meeting

The purpose of this conference was to provide a global forum for all stakeholders within the Rare Diseases field, both locally and abroad, to participate in open discussion, enhance models of best practice and share specialist knowledge around rare diseases and orphan drugs. Incorporating the annual International Conference on Rare Diseases and Orphan Drugs (ICORD) for 2016, RareX had an extended programme, to incorporate patients, their families and caregivers as well as support groups and minority groups within the rare disease community.

The 11th International Conference on Rare Diseases and Orphan Drugs (ICORD) is hosted annually in different countries across the world. 2016 was the first year that this conference was hosted in an African country. It is a massive accolade for South Africa to be selected as host country. This was a great opportunity to get Africa as a continent involved in Rare Disease development, and provide the ideal platform for engagement in the developing world.

RareX 2016, featuring the 11th ICORD Annual Meeting, was also the first conference since the announcement of the collaboration between ICORD and Rare Diseases International (RDI) during the 2015 conference in Mexico. This collaboration seeks to boost progress on rare disease policy development globally, and it formed a major element of the RareX and ICORD conference agenda. RareX 2016 included the official launch of the African Alliance which seeks to unite countries across Africa in their efforts to improve awareness, accessibility to treatment and supportive care as well as development of comprehensive, shared policies amongst member nations.

ICORD and RDI bring the commitment of key leaders in the field of rare diseases and orphan medicines and we encouraged all rare disease stakeholders to participate in the conference – to present their findings, share relevant experiences, participate in interactive debates and discuss innovations, trends and concerns within the field of rare diseases. We also invited fieldworkers, practitioners and patients themselves from around the world to share their experiences and the challenges faced as well as solutions adopted in order to overcome them.

Spier Conference Centre

Set in a beautiful location with spectacular views of the Simonsberg Mountain. The surroundings and activities on offer are a perfect combination to welcome visiting conference attendees.

At Spier, they constantly strive to find innovative ways for their business to succeed in balance with the environment and society. They call their approach to events ‘Conscious Conferencing.’ By hosting an event at Spier, the fulfilment of this approach is made possible by uplifting the community, supporting local businesses, contributing to staff wellness and benefiting the environment. This is all done while treating conference attendees to a fantastic experience.

Sponsored by:

Sanofi Genzyme CSL Behring Equity Pharmaceuticals Marken PerkinElmer Pfizer sobi Audentes iConnect Novartis springernature Celgene Karolinska