rareconnect.org - connecting rare disease patients globally

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Connecting rare disease patients globally

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Patient-led Social Network for Rare Diseases. www.rareconnect.org

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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

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Communities for caregivers

Patient-Patient

Where international patient groups exist

Where no support exists

Without a diagnosis or research

Types of communities

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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)

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What sets RareConnect apart?

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1.Working together

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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

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2.BREAKING BORDERS

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Machine and Human Translation. www.rareconnect.org

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3.QUALITY

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RareConnect – Oct 2011 Workshop, Paris

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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

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What else besides stories and questions?

15Live and on-demand webinars. Rich Patient exchange

16Explaining research and clinical trials. Bridging relationship between patients and researchers

17Capacity-building on new trends. e.g. Crowdfunding

18Targetted 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

19Custom Updates and Analytics. Get insight into who’s out there

20We listen for you and keep you informed. Social Media Dashboard e.g. hootsuite.com

21Tutorials and best practises. Moderators.rareconnect.org

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www.facebook.com/rareconnect

[email protected]

+34 663 092 790

@rareconnect

www.youtube.com/user/eurordis

Thanks.Marta & Rob

Here we are:

www www.rareconnect.org