Update on the Mysasthenia Gravis community on RareConnect.org
Rob Pleticha, Online Communities Manager, EURORDIS
EURORDIS is a non-governmental patient-
driven alliance of patient organisations
representing 571 rare disease patient
organisations in 52 countries.
RareConnect.org is an online social network for patients and
Communities are built in partnership with patient groups who
help create, moderate, and maintain.
Each community is in 5 languages with human translation.
There are 54 rare diseases currently listed on RareConnect,
MG community on RareConnect
Patient-centered community that
promotes global conversation and
connections between patients, families
and caregivers to improve the lives of
people living with rare diseases.
• facilitate patient and carer peer support
• empower patients and carers to trust
• promote progress in research through
patient generated knowledge
• build relationships by inviting
intervention from medical professionals
• Launched June 2013 in 5 languages
– FR, EN, DE, IT, ES
• Seeded with stories, videos, articles…
• Human translation of all future stories
• On demand human translation and Google
Translator for forum posts
• Many topics set for discussion, few responses.
• 145 registered members who have written 7
• 3 articles and 31 forum topics.
Let’s go over some statistics from the MG
The MG community in numbers
5,608 total unique visitors (since June 19th)
Where do the members come from?
1. Unknown 38
2. Italy 27
3. United States 16
4. United Kingsom 9
5. Spain 9
6. Romania 8
7. France 9
8. Ireland 3
9. Martinique 2
10. Switzerland 2
11. Perú 2
12. Hungary 1
13. Netherlands 1
Total of Members: 145
Where do visitors come from?
1. Italy 1,112
2. United States 916
3. France 692
4. Germany 325
5. Spain 316
6. United Kingdom 316
7. Mexico 297
9. Romania 202
10. Canada 126
11. Belgium 118
12. Hungary 106
13. Peru 81
Total of countries: 89
Total of visitors: 5,608
How do visitors find the community?
–Direct traffic 812
–Mobile Facebook 375
Which search terms are used?
– myasthenia gravis
– miastenia gravis
– myasthenia gravis association
– myasthénie forum
– myasthenie medicaments interdits
– alimentazione miastenia gravis
– liste medicaments interdit myasthenie
– miastenia gravis forum
– myasthenia gravis uk
- myasthenia gravis video
- myasthénie grave
- sport e miastenia
- accociation de myasthénie grav
Why the MG community on
• Patient data is not sold
• Patient groups govern the community and drive where
the project goes
• Human translation of stories and forum posts across 5
languages on key issues like accessing treatments
• Help us create an international space for supporting
patients and their families
Privacy on RareConnect
• You can decide if you want a public or private profile.
• Check a box and your message will only be viewable for
• Use a nickname.
• The RareConnect team keeps an eye on all the community
members to ensure they belong there.
If a patient group wants to be involved
on the MG Community
• Join: http://www.rareconnect.org/en/register
• Encourage your members to join the international conversation
enabled by human translation
• Share the link to the Community on your website, social media,
• Place badge on your website/blog or add RSS feed to your website
• Post updates on your group’s activities, share an update to your
How can we grow and engage
What new content can be added?
Keeping communities active
• Organise a webinar with a specialist or researcher
• Ask a healthcare professional to write about their
• Create a short video interview
• Share photos from your recent event
• Share your story as a patient or a caregiver
Trimethylaminuria (TMAU) Webinars
• 5 webinars with prominent specialists
• Over 140 attendees
• Webinars are recorded
• Researchers answer patient questions after
• Patients use webinar as gathering place to
share experience via chat
RareConnect vs. Facebook
Here are a few differences between RareConnect and Facebook:
- Facebook has advertising and sells your information to marketers.
- RareConnect does not have advertising and does not share information
with ANY 3rd parties.
- RareConnect has human translation across 5 languages.
- Facebook uses machine translation.
-Facebook may delete old posts in Groups, without warning or explanation,
old messages disappear.
- RareConnect keeps all messages and stories in the same place, with
- Facebook isn't that concerned with rare diseases.
- RareConnect staff at EURORDIS and NORD want to assist patient groups in
using RareConnect to build an international diseases movement.
+34 663 092 790
Thanks, let us know how we
can work together