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