RareConnect.org

Denis Costello

EURORDIS

1 de Diciembre de 2012

I Encuentro Científico

Familiar Síndrome de Lowe

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A patient-led social network for rare disease patients www.rareconnect.org

Patient-centered community that promotes global conversation and connections between patients, families and caregivers to improve the lives of people living with rare diseases.

Project Aims

• facilitate patient and carer peer support

• empower patients and carers to trust their experience

• promote progress in research through patient generated knowledge

• build relationships by inviting intervention from medical professionals

32 Online Patient Communities Latest live communities for 2012

RareConnect in numbers

• Launched in 2010

• 32 communities live

• 5 communities in development for late 2012: Porphyria, Propionic Acidemia, Univentricular heart, Ring Chromosome 11, Charcot Marie Tooth

• 3,000 registered members (20k visits/month)

• 93 volunteer moderators

• 256 international patient group partners

• 40,000 words translated monthly on average

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Involvement of 256 Patient Groups from 28 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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Myeloma Community

Patient testimonials User Generated Content

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Myeloma Community

Online discussion in several languages More like a stream of conversation than a forum

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Myeloma Community

Breaking down the language barrier On-demand human translation

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Myeloma Community

Social Networking functionality Virtual profile

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New Unified Design Rollout December 2012

Rob Pleticha - Online Communities Manager - Aged 24, Education in Psychology

(Uni. Of Illinois) - Previous experience: 2 Years at

Romanian RD Alliance - Working on RareConnect since Sept

1, 2010

Lead responsibilities within team: • Moderator Support & Empowerment • Quality control of conversations and content on platform • Multimedia content development • Prospecting for new communities Other responsibilities: • Building new communities and being contact point for relationship Pos • Promoting community via visits to conferences

Welcome to Marta Online Community Junior Manager – Joined staff in Sept 2012

Marta Campabadal - 24 years old, from Spain - Previous experience as online

community manager in Catalan Public Administration

- Education in Marketing & excellent understanding of Social Media

- Fluent English Lead responsibilities within team: • Social Media Outreach • Liaising with Spanish speaking patient groups worldwide • Reporting on indicators Other responsibilities: • Building new communities and being contact point for relationship with

certain new communities

Volunteer Moderators

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• 93 volunteers, 2 examples

Joelle Elbaz – FMF Montreal, Canada Inspired to help other individuals affected by Familial Mediterranean Fever to access local genetic testing services and online resources, I created the FMF Montreal project in 2007. FMF Montreal is proud to join the EURORDIS / NORD Rare Disease Communities FMF forum. As an english speaking moderator for this forum, I will be pleased to answer any questions you may have about the disease. Please contact me at: admin@fmfmontreal.org

Ouarda Fareh – Italian Behçet Association, SIMBA Onlus Hi, i'm Ouarda Fareh a patient of the Italian Behçet Association, SIMBA Onlus. I represent the regional Behcet association in Lombardia , in Northern Italy and coordinate with Eurordis as SIMBA Onlus is a full member. I hope that many Behcet patients from Europe and other countries in the world will join our community on line. "All together we can!!"

Translation of French Patient Video

Situation: Creator of French Muckle Wells Association tells life story. We subtitled into 4 other languages

Value: Reach 1,565 views for rare disease with incidence of 1:1,000,000

Involvement of medical experts

• Situation: CDG Community organisers wanted to increase families’ understanding of research.

• Value: Researchers who contributed, established closer ties to the patient community while summarising their work in easily understood terms.

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Funding

Public/Private funding model

Non industry & public funders - 2011

Private funders - 2011 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).

www.facebook.com/rareconnect

denis.costello@eurordis.org

robert.pleticha@eurordis.org

marta.campabadal@eurordis.org

+34 663 092 790

@rareconnect

www.youtube.com/user/eurordis

Thank you very much for your attention

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