Download to read offline
Uploaded byEURORDIS - Rare Diseases Europe
Updates to RareConnect.org in 2014
The 2014 EURORDIS membership meeting provided updates on RareConnect, including new topic groups for rare disease discussions and the introduction of a mobile application to enhance user engagement. The platform is expanding to include open communities for all rare diseases, facilitating connections for those with rare conditions. Additionally, involvement in the IMI project WebAE aims to better mine internet data for drug adverse events.
Updates to RareConnect.org in 2014
- 1. Updates to RareConnectduring 2014 EURORDIS Membership Meeting, Berlin May 2014 #ECRDBerlin
- 2. Overview of updatesduring 2014 1. Topic Groups 2. Open communities for ALL rare diseases but without human translation features 3. Mobile Application 4. Implementation of advanced 3rd party Pharmacovigilance analysis software #ECRDBerlin
- 3. Topic Groups • Discussionsbased on specific themes • Expert moderators from EURORDIS Staff, Volunteers and external areas of professional competence • Available in September 2014 #ECRDBerlin
- 4. Topic Groups -Initial discussions 1. Specialised social services 2. Cross-Border Healthcare 3. Pregnancy and rare diseases 4. Role of patients in Clinical Trials 5. Role of patients in RD research 6. Diagnosis 7. Rare Cancers 8. Pharmacovigilance 9. Industry’s role in RD research and drug development #ECRDBerlin
- 5. Communities for ALLdiseases • Up until now communities created “by hand” bringing together recognised patient groups • Very often no patient groups for very rare diseases • This new feature will allow isolated individuals to start a conversation, ask a question, tell their story • Hopefully it will help start new relationships, and eventually new patient groups • Available in September 2014
- 6. RareConnect - MobileApp • Almost 40% of visits to RareConnect come from smartphones/tablets • A mobile app will facilitate more regular participation in RareConnect and help growth • To be available at least on iPhone and Android devices • Available towards end of 2014 #ECRDBerlin
- 7. Involvement in IMIproject: WebAE A project whose aim is to develop a proof of concept around using technology to data mine the internet for drug adverse events #ECRDBerlin
- 8.
- 9. WebAE involvement 1. Panelof patients drawn from RareConnect moderators to give input 2. Implementation of AE data mining algorithms within RareConnect 3. Communication re adoption of Mobile Application #ECRDBerlin
- 11.
- 12. RareConnect 2014 updates Thank youand please always give us feedback: team@rareconnect.org