Newsletter Archive
2018
- Issue 45: The European Joint Programme on Rare Diseases (EJP-RD)
- Issue 44: Genome-Phenome Analysis Platform and webinars for the ERNs
- Issue 43: Launch of the RD-Connect Community
- Issue 42: Rare disease research explained by patients
- Issue 41: Linking and integration of multi-omics in RD-Connect
- Issue 40: Report from the RD-Connect Annual Meeting in Athens
- Issue 39: Linking patient registry data
- Issue 38: Global impact
- Issue 37: RD-Connect, NeurOmics and EURenOmics: five years on
2017
- Issue 36: Christmas issue
- Issue 35: Biobanks
- Issue 34: Rare disease patient registries
- Issue 33: Ethical, Legal and Social Issues
- Issue 32: Genome-Phenome Analysis Platform and new IRDiRC goals
- IIssue 31: Data linkage plan
- Issue 30: Report from the annual meeting and Outreach Day in Berlin, RD-Connect video and G2MC meeting in Athens
- Issue 29: Patient Advisory Council
- Issue 28: Launch of the European Reference Networks
- Issue 27: Bioinformatic tools
- Issue 26: RD-Connect, NeurOmics and EURenOmics: four years on
2016
- Issue 25: Approval of 23 European Reference Networks
- Issue 24: ID-Cards and EURORDIS recommendations regarding undiagnosed rare disease patients
- Issue 23: FAIR data in patient registries
- Issue 22: Panel for Biobank Assessment
- Issue 21: Announcement of the Annual Meeting in Berlin
- Issue 20: European Reference Networks for rare diseases
- Issue 19: Cross-project updates
2015
- Issue 18: Focus on the American Society of Human Genetics (ASHG) annual meeting
- Issue 17: RD-Connect and NeurOmics: mid-year updates
- Issue 16: Focus on the RD-Connect genomics platform
- Issue 15: The ESHG European Human Genetics Conference 2015
- Issue 14: RD-Connect bioinformatic tools
- Issue 13: The 2nd RD-Connect and NeurOmics meeting, Palma
- Issue 12: Patient registries
- Issue 11: RD-Connect, NeurOmics and EURenOmics: a year in review
2014
- Issue 10: Rare Disease Biobanks
- Issue 9: The 21st EURORDIS Round Table of Companies (ERTC) meting & publication highlights
- Issue 8: The Rare Disease-Patient and Ethics Council (RD-PEC)
- Issue 7: The second RD-Connect jamboree, RD-Connect Electronic Health Records workshop and updates from NeurOmics
- Issue 6: The annual joint projects meeting – Heidelberg, Germany
- Issue 5: Rare Disease Day & PhenomeCentral “matchmaking” web portal
- Issue 4: RARE-Bestpractices, 2013 Golden Helix Symposium – 5th Pan-Arab Human Genetics Conference, new associated partners & RD-Connect: a year in review
2013
- Issue 3: Horizon 2020, national rare disease plans, and ELIXIR updates
- Issue 2: Oncologies and meeting reports
- Issue 1: Global Alliance, NeurOmics, EURenOmics and IRDiRC
