DSAIs Enlightenment and Public Relations Campaigns

1
DSAIs Enlightenment and Public Relations
Campaigns

• An Overview

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Contents

• Introduction
• Activities
• General Media Relations
• Political Lobbying
• Events
• Outlook 2009

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Introduction

• Contact point for persons affected by the
  disease
• DSAI is managed by its chairwoman
• Gabriele Gründl.
• Besides the organizations headquarter in
  Schnaitsee Regional groups were established in
  Berlin, Dusseldorf, Kaiserslautern, Freiburg,
  Frankfurt, Hamburg/Hanover, Leipzig, Nuremberg,
  Stuttgart, Kassel and in the Lahn/Sieg region.
• DSAI was founded 17 years ago with the objective
  to enable persons concerned by
• PID and their family members to exchange
  experiences outside of
• the regular medical care. Meanwhile the
  objectives have long surpassed the purely
• mental support.

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Introduction

• Experts believe that about 100,000 people in
  Germany are affected. Just two years ago, only a
  little under 700 patients had been diagnosed.
• With enlightenment campaigns, supported by
  hospitals, doctors, organizations, companies and
  also people affected by the disease, DSAI has
  since managed to double the rate of diagnosis.
• Meanwhile about 1,400 people are treated for
  PIDs
• in Germany

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Activities
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General Media Relations

• Media relation activities are addressed to the
  consumer media as well as the trade media.
• Tasks
• Developing topics for the trade and regional
  media
• Handling of media inquiries as well as
  acquisition of writers
• Mailing of image material and press releases to
  the media
• Use of the Internet as a communication tool
• Observation of the trade and consumer media
• Organization of events
• Intensive media acquisition patients talk about
  their PID

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Circulation in the Millions for Enlightenment

• More than 350 million newspaper readers in 2006
  and 2007
• More than 60 million TV viewers and radio
  listeners over the past two years

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Reporting in different magazines

• Focus
• Freizeit Revue

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Reporting

• Mach mal Pause
• Freizeit Woche

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Political Lobbying
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Cooperation with ACHSE

• Visit to the Immunodeficiency Policlinic Dresden
  with ACHSE patron Eva-Luise Köhler, the wife of
  the President of Germany, and DSAI patron André
  Sarrasani

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Berliner Signal
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Berliner Signal

• Motto Rare diseases not all that rare. An
  early diagnose saves lives and cuts treatment
  expenses
• Objective Improvement of treatment options and
  increase of detection rate
• 1. Success Change of 116 b
• 2. Success Documents on newborn screening were
  submitted at the Joint National Committee of
  doctors and health insurances (Gemeinsamer
  Bundesausschuss)

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Creation of flyer, poster and website
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Berliner Signal - impressions
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Scientific Symposium in Berlin
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Scientific Symposium, 9 May 2007, in Berlin

• DSAI and the German Society of Immunology
  organized a scientific symposium in Berlin on
  covering the topic of PIDs.
• Objective of the event informing the public, the
  media and politicians that an early diagnosis and
  appropriate therapy significantly improves living
  conditions of patients with PID and of all
  people with rare diseases and reduces health
  care costs in the long run by avoiding costly
  false therapies.
• Guests from politics, health care, charity
  organisations and the media
• Location dbb forum berlin (government district
  of the Federal Republic of Germany)

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Scientific Symposium
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Results and Opportunities

• A big success for the DSAI was the change of
  116b of Social Security Code (SGB) V
• Now the existing PID policlinics can continue to
  exist because of the secure financing. New
  outpatient centres can be established at
  hospitals to ensure care for PID patients all
  over the country
• A further success is the increasing detection
  rate.
• Conclusion
• Significant successes have been attained. Living
  conditions of PID patients can be enhanced
  further if the commitment of all parties involved
  continues (doctors, politicians, patients,
  health insurances). Lives can be saved.

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Reporting on the symposium

• DSAI reached over
• 25 million contacts
• TV stations
• Print media
• Online media

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Multimedia Awareness Campaign
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Multimedia Awareness Campaign

• The 1 Week Awareness
• Campaign on the topic of 116b
• Mailing of a multimedia press release with
  interviews with DSAI supporters as well as
  doctors and patients
• Interviews with Prof. Karl Lauterbach, Gabriele
  Gründl, Steffen Ball
• Mailing via dpa to daily media as well as trade
  publications
• Contacts reached
• 165,276,187

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Further Activities
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Political Lobbying

• Further Activities
• Compilation of a guideline for hospitals
• Its this easy to become a 116b clinic
• Further discussions with decision makers from
  politics and health care as well as hospitals
• Discussions with the patient representative Helga
  Kühn-Mengel on the topic of nationwide patient
  care and recognition of PID as a practice
  exception (Praxisbesonderheit) as well as
  precautionary care for babies
• Personal letter to hospital decision makers with
  an appeal to submit the application for 116b

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DSAI Events
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Gala Night of the Stars at the Trocadero
SarrasaniTheater Dresden
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Gala Night of the Stars with patron André
Sarrasani

• Charity event at the Trocadero Sarrasani
• Theater Dresden in February 2008
• Objectives
• Awareness for PID
• Collecting money for DSAI

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Gala Night of the Stars at Sarrasani

• Impressions

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Plasma Donation Conferencein Offenbach,
Bielefeld and Nuremberg
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Germany lacks plasma

• Donor cafés in Bielefeld, Nuremberg and Offenbach
• Motto donors meet affected persons
• Nationwide media activities, Support by
  celebrities
• Big media echo

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Media Echo
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1. Global Immunology Day 2007

• Events in cooperation with
• Medical University of Hanover (MHH)
• Information event for students, patients and
  anybody else interested in the topic of PID
• German Society of Immunology (DGfI)
• Events on the topic of the immune system in
• Jena
• Erlangen
• Rostock
• Munich
• Berlin

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1. Global Immunology Day 2007

• Events in cooperation with
• Symphonic Orchestra Dusseldorf
• DSAI charity concert Spanish Sounds
• Bone marrow typing activities
• Immunodeficiency clinics nation-wide
• Information events and info booths on the topic
  of PID
• in Frankfurt, Dusseldorf, Freiburg, Berlin,
  Hamburg
• Some more events in
• Marburg, Hanover and Munich

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Medal of Honour for Enlightenment Activities
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Medal of Honour of the German Society of
Immunology for Gabriele Gründl

• Awarded on 5 September 2007 by the German Society
  of Immunology (DGfI)
• In recognition of the selfless and efficient work
  she does as the chairwoman of DSAI
• Conclusion by Gabriele Gründl was
• I am very honoured and glad to receive this
  medal. We have been committed to enlightenment
  about PIDs since 17 years.
• The early diagnosis and an appropriate therapy
  are the basis for an everyday life that is worth
  living.
• But we are still far from reaching our final
  goal, there is still a lot that needs to be done.

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Medal of Honour for Gabriele Gründl

• Reporting among other in Rhein-Neckar Zeitung

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Open Day
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Open Day

• On 16 June 2007, DSAI president Gabriele Gründl
  extended an invitation for an open day at the new
  DSAI headquarter in Schnaitsee. The new office
  was built above a former grain depot.
• Many interested personsfollowed the invitation
  and obtained informationon the clinical picture

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Further Education for Doctors

• DSAI is the only self-help group which
  organizes nationwide further education for
  doctors. Together with the respective hospitals
  DSAI draws up a concept that guarantees that the
  events run smoothly. From the design of the
  invitations to printing the posters and
  brochures, to the catering DSAI takes care of
  the whole organization of the training events.
• The motto in 2008
• Just a lasting cold or an error in the
  system?
• This trainings have been hold in Regensburg,
  Munich, Hamburg
• and Stuttgart. The last one for this year
  will be in November in Leipzig.

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SCHOOL EVENTS

• Together with the immunodeficiency policlinics
  the DSAI
• organizes regular school events on the topic
• The Immune System
• 31.10.2008 and 14.11.2008 in Munich
• 05.12.2008 in Berlin
• More than 1000 pupils will join this events.
• Always a big help to announce how
• the immune system works
• is the DSAI cartoon IMMUN IM CARTOON .
• The pupils get the cartoon at the events.
• Afterward the teachers use the cartoon in
  classes.

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Patient Meetings in

• Heidelberg 31.05.2008
• Schnaitsee 05.07.2008
• Frankfurt 06.09.2008
• Krefeld 20.09.2008
• Siegen 20.09.2008
• Hanover 20.09.2008
• Stuttgart 11.10.2008
• Berlin 25.10.2008
• Leipzig 15.11.2008

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Children's Press Conference in Dusseldorf
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DSAI Childrens Press Conference on 6 May 2008
in Düsseldorf

• Topic PIDs Dramatic Health Care Lack in NRW
• Affected children from Dusseldorf and the
  surrounding region as well as immunology experts
  and politicians from the region provided
  information on PIDs, current therapy options and
  the dramatic lack of health care for patients.
• 287,613,338
• contacts reached

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DSAI Audio Play
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DSAI Audio Play

• With the help of the DSAI Audio Play we want to
• sensitize children, teenagers and parents as well
  
• as those potentially affected for the PID
  topic.
• The objective is to enlighten students about
• the Immune system and the clinical picture
• in a slightly different way.
• Activities
• The audio play is offered schools all over the
  country for classes
• Presentation of the audio play at information
  events at schools, patient meetings all over the
  country and student
• information events at university hospitals
• Presentation of the audio play at Sarrasani
  circus shows
• The PID policlinics will get the audio play for
  the affected children

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DSAI Mascot
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A defence soldier for pathogens

• The DSAI mascot is meant to sensitize
• students at school in particular for the
• PID topic.
• They can touch and feel the mascot
• It appeals to the senses of the children and
• spark their interest for this clinical
• picture. Furthermore, we want
• the DSAI mascot to be a comfort to
• the affected children.

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Outlook 2009
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Outlook 2009

• Formulation of generally accepted standards for
  immunodeficiency clinics
• Further meetings with politicians, medical
  fraternity and health insurance companies
• Including Immunodeficiency Signals in the
  statutory preventive medical check-up for small
  children
• Gala Night of the Stars 2009
• Immunology Day 2009
• Production of a documentation on PID for schools
  and special events
• Presenting an advertising spot in more than 50
  cinemas
• A further political event
• Extension of the further education events for
  doctors nationwide
• Acquisition of further patrons and further
  sponsors

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