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Denis Costello, EURORDIS, presenting on RARECONNECT, the Rare Disease / Rare Cancer Community Platform for patient organisations, at EMCC in Stockholm on 25 Sept 2011
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RARE CANCERS COMMUNITIES PARTICIPATING IN THE RARECONNECT.ORG PROJECT
ECCO/ESMO STOCKHOLM 2011
Denis Costello
Web Communications Officer, EURORDIS
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www.rareconnect.org
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12 Communities live
Launched in April 2010
Jan 2011
Feb 2011
March 2011
March 2011
April 2011
April 2011
April 2011
May 2011
May 2011
Sept 2011
Sept 2011Multiple Myeloma
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Myeloma Community
Patient testimonialsUser Generated Content
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Myeloma Community
Online discussion in several languagesMore like a stream of conversation than a forum
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Myeloma Community
Breaking down the language barrierOn-demand human translation
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Myeloma Community
Social Networking functionalityVirtual profile
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Involvement of 64 Patient Groups from 22 countries
• NOMID Alliance• AMWS/CINCA• VHL Family Alliance International• German Assoc. for VHL Families• Danish Assoc. for VHL• Alianza española de familias de VHL• VHL France• A Magyar VHL Társaság• Dutch VHL Organization• Canadian CAPS Network• VHL Contact Group U.K.• AIFP• Stichting FMF-Community Nederland• AFFMF• FMF Montreal• AKU Society UK• Alcaptonurie France• findAKUre• Foundation for Children with Atypical
HUS
• AIRG• Argenina VHL Assoc.• SIMBA Italy• Ass. Française de Behçet• As. Española de Behçet• DebRA International• DebRA Belgium• DebRA Croatia• DebRA UK• DebRA Austria• EB-Haus Austria• UK Behçet’s Syndrome
Society• DEBRA España• DebRA Canada• Fundación DEBRA México• AHC Assoc. Iceland• A.I.S.EA• AESHA• AHC Foundation• L’aim AKU
• DebRA Norway• DebRA Italy• Cystinosis Support Australia• Cystinosis Foun. France• Cystinosis Support Germany• Cystinosis Foun. Ireland• Mexican Cystinosis Association• Cystinosis Group Netherlands• Cystinosis Foun. UK• Cystinosis Foun. USA• Cystinosis Research Network• South Africa Support Group• Cystinosis Research Foundation• Danish HSP Assoc.• A.SL-HSP France• Spanish HSP Assoc.• Italian Assoc. for Living with SP• Holland Asoc. of Neuromusc.
Disease• Spastic Paraplegia Foundation
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The investment from EURORDIS
68 hours of webinars to NORD & EURORDIS membership (group and individual)
25 days of attendance at conferences International AutoImmune Congress Orphanet Patient Association Forum European Hematology Congress Visit to NORD
Accompaniment through involvement process 4 workshops (Krakow, Amsterdam x 2, Paris) Presentations to Council of European Federations, ERTC,
Summer School
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Funding
Public/Private funding model
Charitable organisation and Public Health funders - 2010
Private funders - 2010 through the EURORDIS/NORD Corporate partnership for Social Media. All private funding is fully independent (funders exercise no influence on decisions related to the platform).
Patient Disease Management tool
Patient reported outcomes:
- Treatments- Side effects- Quality of Life
Compare side-effects over time & against aggregated data from other patients
