RareConnect.org webinar: How to start an awareness day for your rare disease
Update on the Mysasthenia Gravis community on RareConnect.org
30
Rob Pleticha, Online Communities Manager, EURORDIS International MG Community
-
Upload
eurordis-rare-diseases-europe -
Category
Health & Medicine
-
view
169 -
download
0
description
After being launched for 1 year, the RareConnect team updates the EuMGa, the European Myasthenia Gravis Federation on progress made in the MG community.
Transcript of Update on the Mysasthenia Gravis community on RareConnect.org
Rob Pleticha, Online Communities Manager, EURORDIS
International MGCommunity
EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 571 rare disease patient organisations in 52 countries.
RareConnect project
RareConnect.org is an online social network for patients and families.
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, including porphyria.
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.
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
MG Community
• Launched June 2013 in 5 languages – FR, EN, DE, IT, ES• Seeded with stories, videos, articles…• Human translation of all future stories
automatically• On demand human translation and Google
Translator for forum posts
MG Community
• Many topics set for discussion, few responses.• 145 registered members who have written 7
testimonials.• 3 articles and 31 forum topics.
Let’s go over some statistics from the MG community…
Partners and Patient groups involved
The MG community in numbers
5,608 total unique visitors (since June 19th)
Where do the members come from?
1. Unknown 382. Italy 273. United States 164. United Kingsom 95. Spain 96. Romania 8
7. France 98. Ireland 39. Martinique 2
10. Switzerland 2
11. Perú 212. Hungary 113. Netherlands 1
Total of Members: 145
Where do visitors come from?
1. Italy 1,1122. United States
9163. France 6924. Germany 3255. Spain 3166. United Kingdom 316
7. Mexico 297
9. Romania 202
10. Canada 12611. Belgium 11812. Hungary 10613. Peru 81Total of countries: 89
Total of visitors: 5,608
How do visitors find the community?
–Google 3,046–Direct traffic 812–Facebook 806–Mobile Facebook 375–Eurordis.org 118–Miastenie.ro 90–Twitter 73
Which search terms are used?– myasthenia gravis– miastenia gravis– myasthenia gravis association– myasthénie forum– myasthenie medicaments interdits– miastenia– alimentazione miastenia gravis– liste medicaments interdit myasthenie
– miastenia gravis forum– myasthenia gravis uk
- myasthenia gravis video- myasthénie grave- sport e miastenia- www.mga-charity.org- accociation de myasthénie gravis
Which topics are being discussed?
Why the MG community on RareConnect?
• 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
registered members.
• 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, newsletter
• 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 family’s journey
How can we grow and engagemembers?
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 work
• 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
the presentation• Patients use webinar as gathering place to
share experience via chat
Involvement of medical experts
Involvement of medical experts
Community poll & Infographic
- Translated into 5 languages- Designed by patient groups
Community poll & Infographic
- Visual and attractive- Perfect for Social Media- Available in 6 languages (including chinese)
Alkaptonuria (AKU) clinical trials
Video Interviews
Patient organisations activites
RareConnect vs. FacebookHere 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 permanent links.
- 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.
www.facebook.com/rareconnect
[email protected]@eurordis.org
+34 663 092 790
@rareconnect
www.youtube.com/user/eurordis
Thanks, let us know how we can work together
More information:
