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RareConnect.org - Connecting Rare Disease Patients Globally
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RareConnect.org - Connecting Rare Disease Patients Globally

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  • 1. 1 Connecting rare disease patients globally
  • 2. 2 Patient-led Social Network for Rare Diseases. www.rareconnect.org
  • 3. 3 RareConnect in numbers 53 disease-specific communities across 5 languages 60.000 monthly unique visitors from 170 countries. 2500 member visits/month (each member spends 12 minutes/per visit on avg) +6000 user-generated content items in 2013
  • 4. 4 Communities for caregivers Patient-Patient Where international patient groups exist Where no support exists Without a diagnosis or research Types of communities
  • 5. 5 A Alkaptonuria (AKU) Alstrom Syndrome Alternating Hemiplegia (AHC) Amyloidosis Atypical Hemolytic Uremic Syndrome (aHUS) B Behçet’s Syndrome C CAPS CDG Coats Disease Cobb Syndrome Cryoglobulinemia Cystinosis D Dravet Syndrome DysNet E Ehlers-Danlos Syndrome (EDS) Epidermolysis Bullosa (EB) Erdheim-Chester Disease (ECD) Evans Syndrome F Familial Mediterranean Fever (FMF) Fibromuscular Dysplasia (FMD) G Glut1 DS H Hereditary Leiomyomatosis And Renal Cell Cancer (HLRCC) Hereditary Spastic Paraplegia (HSP) I Idiopathic Pulmonary Fibrosis (IPF) L Leigh Syndrome Lipoprotein Lipase Deficiency (LPLD) Lowe Syndrome M Malignant Infantile Osteopetrosis (MIOP) Mastocytosis And Mast Cell Activation Disorders Moebius Syndrome Multiple Endocrine Neoplasia (MEN) Multiple Myeloma Multiple System Atrophy (MSA) Myasthenia Gravis (MG) N Narcolepsy Neuroacanthocytosis Neurodegeneration With Brain Iron Accumulation NBIA P Paraneoplastic Neurological Syndrome (PNS) Pitt Hopkins Syndrome (PTHS) Porphyria Propionic Acidemia (PA) Pulmonary Hypertension (PH) R Rett Syndrome T Trimethylaminuria (TMAU) Tumor Necrosis Factor Receptor-Associated Periodic Fever Syndrome (TRAPS) U Undiagnosed Brain Diseases V Von Hippel-Lindau (VHL) W Waldenstrom Macroglobulinemia (WM) WHIM Syndrome (WHIM)
  • 6. 6 What sets RareConnect apart?
  • 7. 7 7 1.Working together
  • 8. 8 Involvement of 400 Patient Groups from 40 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
  • 9. 9 2.BREAKING BORDERS
  • 10. 10 Machine and Human Translation. www.rareconnect.org
  • 11. 11 3.QUALITY
  • 12. 12 RareConnect – Oct 2011 Workshop, Paris
  • 13. 13 Over 200 moderators from +20 countries Tools: 1. Online Community Charter/Guidelines 2. Moderator Training Guide (How to be a good moderator) 3. Day to day support via 3 Full time community managers 4. A private Google Group for peer support 5. Monthly webinars 6. A Blog to share best practises moderators.rareconnect.org 7. Face to face workshops
  • 14. 14 What else besides stories and questions?
  • 15. 15 Live and on-demand webinars. Rich Patient exchange
  • 16. 16 Explaining research and clinical trials. Bridging relationship between patients and researchers
  • 17. 17 Capacity-building on new trends. e.g. Crowdfunding
  • 18. 18 Targetted online advertising campaigns. On Facebook and Google Adwords creating reach of over 3 million people TIP: Don’t forget to look at google.com/nonprofits
  • 19. 19 Custom Updates and Analytics. Get insight into who’s out there
  • 20. 20 We listen for you and keep you informed. Social Media Dashboard e.g. hootsuite.com
  • 21. 21 Tutorials and best practises. Moderators.rareconnect.org
  • 22. 22 www.facebook.com/rareconnect team@rareconnect.org +34 663 092 790 @rareconnect www.youtube.com/user/eurordis Thanks. Marta & Rob Here we are: www www.rareconnect.org

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