EURORDIS Membership Meeting - Edinburgh 2016

Satellite Meeting RareConnect

14:00 – 15:00 RareConnect Update (Speaker: Robert Pleticha)

15:00 – 15:30 RareConnect Discussion Groups (Speaker: Denis Costello)

15:30 – 16:00 Coffee break

16:00 – 17:30 PhenomeCentral and the MatchMaker Exchange: an introduction to rare disease matchmaking for discovery of novel disease genes by clinicians and patients (Speaker: Michael Brudno, Sick Children’s Hospital, Toronto, Canada)

17:30 Conclusion (Speaker: Denis Costello)

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New logo

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Homepage

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Reskinned Platform

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Discussion Groups

1,100,000 visits

Over 23000

members

Annual growth :

+18%

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RareConnect update

#ECRD2016

84 online communities

746 patient groups

306moderators

RareConnect update

*with 62 patient groups since May 2015

• Vasculitis• Williams syndrome• Neurofibromatosis type 1• Neurofibromatosis type 2• Brown-Vialetto-Van Laere

syndrome• Stiff Person Syndrome• Lipodystrophy• Pityriasis Rubra Pilaris

• Chromosome 18 abnormalities

• Primary Sclerosing Cholangitis

• Leber hereditary optic neuropathy

• Undiagnosed diseases• Ring chromosome 20

syndrome

14 new communities*

• Urea cycle disorders with CLIMB UK• Gaucher disease with EU Gaucher Alliance• Spontaneous coronary artery dissection with

Beat SCAD UK + EU patients

Under construction

52%

17% 11% 10%

2%8%

Language usage

Translation: 100,000 words/month

RU / HR+SR over the summer

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Top 10 countries

1. United States2. Italy3. France4. United Kingdom5. Spain6. Germany7. Canada8. Mexico9. Australia10.Argentina

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Top 10 communities with most members

Behçet's SyndromeTrimethylaminuria (TMAU) Ehlers-Danlos SyndromeMastocytosisCAPSHereditary Spastic ParaplegiaFamilial Mediterranean FeverIdiopathic Pulmonary Fibrosis (IPF)Multiple System Atrophy (MSA)Pemphigus And PemphigoidPorphyria

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COMMUNICATION CHANNEL

REFER PEOPLEOPERATED IN PARTNERSHIP

Are supported by a diverse group of patient groups or

advocates who see the value in working

together

Act as an additional communication

channel for patient groups to stay active in the

disease area online

Refer people with questions, back to

the patient group or disease contact in

their country

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Active RareConnect Communities

Woman from Verona, Italy finally diagnosed after 20 years, is looking for a specialist. No patient group in Italy

https://www.rareconnect.org/en/community/erdheim-chester-disease/article/histiocytosis-erdheim-chester-disease

“As far as I know there is no Erdheim Chester disease centre in Italy.”

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Reach new people with RareConnect

Moderator from US patient group knows two centres for the disease in Italy and contact persons

“There are two ECD Referral Care Centers in Italy. Both are managed by very good and caring doctors.”

#ECRD2016https://www.rareconnect.org/en/community/erdheim-chester-disease/article/histiocytosis-erdheim-chester-disease

Woman from Verona, Italy finally diagnosed after 20 years, is looking for a specialist. No patient group in Italy

“As far as I know there is no Erdheim Chester disease centre in Italy.”

Reach new people with RareConnect

• That important message, and the entire thread is human translated

• RareConnect community means patient associations can outreach to new members in need of information

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RareConnect patient groups work together

Here is how some take part in RareConnect:• human translation• international community of patient groups• moderators exchanging on situation in

their countries• shared actions, awareness days• maps and facilitating peer support

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Working internationally as a patient group

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Being part of international disease group

Monica, Sweden Nadia, USA Erin, UK

Marie-Helene, France Mark, USA Fabrice, Belgium

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Moderators behind international cooperation

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Shared actions

Rare diseases beyond borders

• Pool together the expertise of all patients in managing their disease

• Access to treatments may be unequal, let’s make access to support available for all

• Having “a few French people” in your Facebook group doesn’t really mean you are international

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Rare diseases beyond borders

Members section of

each community now has

map enabled to help

people find others in

their country and

connect through private

messaging while also

allowing patient groups

to get an idea of what the

worldwide distribution

of patients looks like

RareConnect maps

Members can choose to share no location, or only country, don’t have to share city.

As always, members don’t have to put their real name and can use a pseudonym.

Before being able to contact another member from the map privately, you have to be registered on that community and have a friend request accepted.

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Map safety

I would like to connect with others with FMD in New Zealand, learn more about this condition, live life well, take long walks and generally do as well as I can.

I am more than happy to be in touch. I just saw you on the map! I live in Auckland. You are welcome to contact me.

International knowledge, local connections

• Atypical HUS groups recruit specialists to analyse patient survey results

• Next one: June 21st, 5pm Register here.

Webinar series

• You’ll be invited if you signed the registration sheet

• Wednesday, June 29 at 19.00h CET

• Topic: How to start a Twitter account for your rare disease

• With Emma Rooney, a Gaucher disease patient advocate

RareConnect webinar: Twitter

https://www.rareconnect.org/en/article/steps-in-creating-a-community-on-rareconnect

Determineneed

Collectinformation

Let’s goforward

Sharecontent

Test site

Public launch

Findpartners

PromotionPresent

RareConnect

Want a community?

blog.rareconnect.org

Webinar discusses best practices from perspective of Aortic Dissection, Scleroderma and Rare Disease Day http://blog.rareconnect.org/tip-of-the-

week/rare-disease-awareness-days/

http://blog.rareconnect.org/tip-of-the-week/rare-disease-awareness-days/

http://blog.rareconnect.org/social-media-case-studies/raredisease-list-of-hashtags/

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Introducing the new team

LAURAItalyWeb Technology Manager

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Introducing the new team

TIHANACroatiaRareConnect Outreach Manager

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Introducing the new team

IGORSerbia

RareConnect Web Content Manager

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Introducing the new team

SANDRASerbia

RareConnect Manager

Introducing the new team

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