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

robert.pleticha@eurordis.orgmarta.campabadal@eurordis.org

+34 663 092 790

@rareconnect

www.youtube.com/user/eurordis

Thanks, let us know how we can work together

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