0
1
Connecting rare disease patients globally
2
Patient-led Social Network for Rare Diseases.
www.rareconnect.org
3
RareConnect in numbers
53 disease-specific communities
across 5 languages
60.000 monthly unique visitors
from 170 countr...
4
Communities for caregivers
Patient-Patient
Where international patient
groups exist
Where no support exists
Without a di...
5
A
Alkaptonuria (AKU)
Alstrom Syndrome
Alternating Hemiplegia (AHC)
Amyloidosis
Atypical Hemolytic Uremic Syndrome (aHUS)...
6
What sets RareConnect apart?
7
7
1.Working
together
8
Involvement of 400 Patient Groups from 40
countries
• NOMID Alliance
• AMWS/CINCA
• VHL Family Alliance International
• ...
9
2.BREAKING
BORDERS
10
Machine and Human Translation.
www.rareconnect.org
11
3.QUALITY
12
RareConnect – Oct 2011 Workshop, Paris
13
Over 200 moderators from +20 countries
Tools:
1. Online Community Charter/Guidelines
2. Moderator Training Guide (How t...
14
What else besides stories and
questions?
15
Live and on-demand webinars.
Rich Patient exchange
16
Explaining research and clinical trials.
Bridging relationship between patients and researchers
17
Capacity-building on new trends.
e.g. Crowdfunding
18
Targetted online advertising campaigns.
On Facebook and Google Adwords creating reach of over 3 million people
TIP:
Don...
19
Custom Updates and Analytics.
Get insight into who’s out there
20
We listen for you and keep you informed.
Social Media Dashboard e.g. hootsuite.com
21
Tutorials and best practises.
Moderators.rareconnect.org
22
www.facebook.com/rareconnect
team@rareconnect.org
+34 663 092 790
@rareconnect
www.youtube.com/user/eurordis
Thanks.
Ma...
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RareConnect.org - Connecting Rare Disease Patients Globally

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Transcript of "RareConnect.org - Connecting Rare Disease Patients Globally"

  1. 1. 1 Connecting rare disease patients globally
  2. 2. 2 Patient-led Social Network for Rare Diseases. www.rareconnect.org
  3. 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. 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. 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. 6 What sets RareConnect apart?
  7. 7. 7 7 1.Working together
  8. 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. 9 2.BREAKING BORDERS
  10. 10. 10 Machine and Human Translation. www.rareconnect.org
  11. 11. 11 3.QUALITY
  12. 12. 12 RareConnect – Oct 2011 Workshop, Paris
  13. 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. 14 What else besides stories and questions?
  15. 15. 15 Live and on-demand webinars. Rich Patient exchange
  16. 16. 16 Explaining research and clinical trials. Bridging relationship between patients and researchers
  17. 17. 17 Capacity-building on new trends. e.g. Crowdfunding
  18. 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. 19 Custom Updates and Analytics. Get insight into who’s out there
  20. 20. 20 We listen for you and keep you informed. Social Media Dashboard e.g. hootsuite.com
  21. 21. 21 Tutorials and best practises. Moderators.rareconnect.org
  22. 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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