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Open Discussions/New Issues Forum/ Future Emphasis of ICORD Meetings

Open Discussions/New Issues Forum/ Future Emphasis of ICORD Meetings. Jan-Inge Henter, MD, PhD Professor of Pediatrics Karolinska University Hospital Stockholm, Sweden. How to develop ICORD further?. We have established an international forum for Patient group representatives

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Open Discussions/New Issues Forum/ Future Emphasis of ICORD Meetings

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  1. Open Discussions/New Issues Forum/Future Emphasis of ICORD Meetings Jan-Inge Henter, MD, PhD Professor of Pediatrics Karolinska University Hospital Stockholm, Sweden

  2. How to develop ICORD further? • We have established an international forum for • Patient group representatives • Society representatives (includiung regulators) • Industry representatives • .. but Academia representatives are to few

  3. Academia is important in RD • Most RD development comes from Academia • Identifying new disease mechanisms • Identifying new possible drugs • Developing new drugs (often with Industry) • Improving therapy with old drugs • Clinical trials with known drugs • Improving diagnostics • So that treatment can start earlier • Improving patient monitoring

  4. How to get Academia into ICORDMake ICORD a Large Rare Disease Forum! • Maybe family organisations can arrange Scientific Society Annual Meetings at ICORD! • Provides access to physicians, new therapy and research • Provides support for academic clinical trials • In addition maybe one common day for all Societies • Statistical lectures • Clinical trials support, ethical applications, FDA/COMP • Industry will get access to many meetings in one • Regulators get close to researchers and industry • Family organisations can meet and teach each other

  5. Future Opportunities Make ICORD a Large Rare Disease Forum! • Assist Academia to arrange Meetings here • Assist Academia in running clinical trials • A Vision – but maybe only a Dream

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