and its 2017 first french nation-wide Growth Awareness Campaign - PowerPoint PPT Presentation

The « Grandir » association and its 2017 first french nation-wide Growth Awareness Campaign Peter Coopman ( peter.coopman@grandir.asso.fr ) ICOSEP Annual Meeting, April 19-21 2018, Warsaw

« Grandir » association France Structure & organization Publications Communication Activities 2017 Growth Awareness campaign

Structure & organization Founded March 1979, recognized by Ministry of Health Concerns all growth hormone-related pathologies President (Dr. Béatrice Demaret) Bureau (5 members) Administration council (20 members) Scientific advisory board (10 MDs) Regional responsables (12 in France, 1 in Switzerland) Relay families (~27) ALL ARE VOLUNTEERS!!

Publications Information Flyer Newsletter/Journal (Physicians, hospitals, (members, hospitals, communication activities) communication activities)

Publications Information booklet « I’m too small » (Educational nurses, Physicians, hospitals, communication activities)

Communication Internet web site grandir.asso.fr forum & discussion groups grandir.asso.fr (open & anonymous) twitter.com/AssoGrandir Written press & occasional interviews: e.g. trial of the « contaminated growth hormone »

Activities Local medical information meetings (given by MDs) Annual national family meeting A « must » for kids, young adults, parents,… Key activity: self-injection workshop

Activities Colonies for children / teenagers Next colony: Theix October 21-28 2018 Fundraising activities: sport events,…

How medical students and social media worked for the 2017 Growth Awareness campaign Organized by: Romain Vankemmel romain.vankemmel@ grandir.asso.fr

How we involved our medical university in 7 steps : Time frame February to May 1) Think how to make awareness efficient, plan, prepare, search for sponsorship (low budget) May 2) Refer to specialist’s advice (Pediatric Endocrinology Dpt.) (poster content, How to talk about growth disorders) 3) Ask for permission (vice-dean student affairs) June 4 ) Display : contact University communication Weeks before department to display awareness messages indoors on video screens 5) Promote the event : official announcement by Days before the Dean of the University 6) Announce the campaign to medical students Who we targeted : (See video) 7) Be present! (2h/day, during 1 week, sept. 19-23) - All medical students , who are / will be doing internships in pediatric departments and in general practice - In the Lille School of Medicine, North of France = more than 11,000 students (largest medical university in France) - WILL BE REPEATED IN 2018 by Romain!!! & in other universities???

Displayed Poster (Univ. main entrance hall) & 200 Flyers (english) (Print shop sponsored) For the next poster to medical students, your ideas are welcome ! romain.vankemmel@ grandir.asso.fr

Facebook movie Good growth = good health Growth problems: act quickly Wednesday sept 20th: World’s Children’s growth awareness day Join us

How we used social networks: 4 tools - Whiteboard video on Facebook/Web page - “Smart messages” on Facebook wall (jpeg format, blue background) - “ Grandir profile picture” to use and share - R equest : “please share !” Facebook messages Location of persons that reached the campaign by Facebook (Facebook stats) Number of views of our Facebook page Legend: number of persons - blue & purple : < 30 - green : 30 to 49 - yellow : 50 to 79 - orange : 80 to 119 - red : 120 to 700 A maximum of 5,000 views on the Awareness Day (September 20 th )

Results of our 2017 first french nation-wide Growth Awareness campaign - Novel initiatives of medical students during their internships (information, discussion, support) - Increased awareness amongst physicians and students in the north of France (> 12 000 km 2 ) - At the national level: more followers on social media (Facebook) More families contacted the “GRANDIR” association - More actions have been initiated to raise funds and increase awareness (eg running competition) - Support has been provided from other patient associations during the campaign : special thanks to ICOSEP (Ashley & Jamie) MAGIC (Mary) Child Growth Foundation (UK) Turner Syndrome Global Alliance Des choeurs pour Grandir (Silver Russell Syndrome) Association Surrénales Craniopharyngiome Solidarité

president@grandir.asso.fr