This presentation was given on July 28th during the Pitt Hopkins UK support group meeting in Manchester, UK. Join the Pitt Hopkins syndrome community here: https://www.rareconnect.org/en/community/pitt-hopkins-syndrome/understand

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Pitt Hopkins community on
RareConnect.org
Rob Pleticha, EURORDIS
RareConnect Community Manager

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

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RareConnect in numbers
60 disease-specific communities across 5 languages
70.000 monthly unique visitors from 170 countries
2500 member visits/month
(each member spends 12 minutes/per visit on avg)
Over 1 million words human translated to date

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What’s unique about
RareConnect?

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5
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 – Moderators 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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Rob Pleticha
- Online Communities Manager
- Aged 28, Education in
Psychology (Uni. Of Illinois)
- Previous experience: 2 Years at
Romanian RD Alliance
Marta Campabadal
- Online Communities Manager
- 24 years old, from Spain
- Social Media Coordination
- Spanish Outreach
- Education in Marketing &
Community Management

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Est. 2011

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•47 members
•4 patient groups
•9 articles
•9 testimonials
•23 forum topics
Pitt Hopkins community on RareConnect.org

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Updates from around the world

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International stories translated by humans

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Members looking to connect

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Traffic
Who has visited the PTHS
Community over the last 3 months?
1,099 unique visitors
What do they do when they visit?
These visitors visit 3.40 pages on
average

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Countries with most visitors
1. United States 391
2. Germany 136
3. France 128
4. Italy 78
5. United Kingdom 77
6. Canada 65
7. Spain 54
8. Australia 20
9. Belgium 14
10. Mexico 12

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How are people finding the community on search
engines?
1. pitt hopkins syndrome life
expectancy
2. pitt hopkins syndrome
3. pitt hopkins syndrom
4. pitt hopkins
5. pitt hopkins life expectancy
6. sindrome pitt hopkin
7. pitt hopkins syndrom
erkrankung
8. pitt hopkins syndrome
symptoms

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-Strengthen communication across groups by posting updates on
RareConnect
-Share PTHS community link in your groups
-Share community on social media
-Active participation
-More moderators to respond to questions
-Engagement, interest, resources allocated to the community
What’s needed?

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www.facebook.com/rareconnect
team@rareconnect.org
+34 663 092 790
@rareconnect
www.youtube.com/user/eurordis
Thanks, write me:
Robert.pleticha@eurordis.org
Here we are:
www
https://www.rareconnect.org/
en/community/pitt-hopkins-
syndrome