World PI Week 2012

A Repeat Success!

WPIW: Building the PI Community

WPIW Founding Partner Benefactor

World PI Week Mission • Drive recognition of Primary Immunodeficiencies (PI) as an increasingly important

disease group

• Increase understanding amongst medical professionals, researchers, nurses, parents, school teachers, day care employees and the public

• Stimulate efforts to improve recognition, diagnosis, treatment and quality of life of people living with PI world-wide

• Encourage health authorities to use awareness materials produced by JMF, IPOPI and other stakeholders to promote timely diagnosis and treatment

• Promote the model of combining physician education and global awareness with the infrastructure to diagnose and treat PI

• Stimulate national outreach towards governments by promoting use of the PI

‘advocacy’ tool kit with key material and argumentation

Campaign theme for 2012: Access to Treatment!

WPIW Website: What’s new in 2012

Poster & postcard translated in 8

languages

PI leaflets uploaded in

multiple languages

A dedicated press corner with all

media coverage

WPIW Campaign Materials

• Access to Treatment Poster and Postcard translated into Arabic, French, German, Italian, Polish, Portuguese,

Spanish, Serbian

• WPIW Press Release on Rare Disease Day to link both campaigns

• Advocacy Toolkits updated & Monthly E-blasts sent between October to April to drive action

Campaign Achievements Highlights

Scientific Editorial The 2012 Scientific Editorial "Early diagnosis and appropriate treatment - improving and saving life of patients with primary immunodeficiencies" published in 13 Journals and Newsletters (3 in 2011)

• European Journal of Immunology • The online British Journal of Immunology (Clinical & Experimental Immunology,

CEI) • JACI (Journal of Allergy and Clinical Immunology) News Beyond our Page blog • Revista de Alergia Mexico • Actca Perdiatrica de Mexico • Boletin Medico del Hospital Infantil de Mexico • Revista de Alergia, Asma e Inmunología Pediatrica • Health Journal Moroccan (directed to GPs) • Moroccan Journal of Health (directed to public) • Moroccan journal of children diseases • ESID Newsletter • INGID Newsletter • JMF online

WPIW 2012: New Partners

• PPTA Join the WPIW Steering Committee and Community

• CIS and IDF will join the WPIW Steering Committee and Community for 2013

WPIW 2012: Media Coverage

WPIW 2012: New Signatures

2011: launch of the Global Call with 339 signatures

2012: 478 signatures of the Global Call to Action to date

• Success of Global Call to Action lead to launch of LASID and ASID and Serbian Call to Actions

WPIW 2012: Country Involvement

• 32 participating countries across the world

• 2011: 28 participating countries

• 90 reported events reported on the website

• 2011: 30 reported events

• Participating Countries Argentina, Australia, Belgium, Brazil, Canada, Colombia, Czech Republic, Egypt , France, Germany, Greece, Hungary, India, Iran, Italy, Japan, Mexico, Morocco, Netherlands, Peru, Poland, Portugal, Puerto Rico, Serbia, Slovakia, South Africa, Spain, Sweden, Turkey, UK, USA, Venezuela

WPIW 2012: Promotion

• Increased NMOs participation • Increased number and type of activities by local organisers

• Recognition by public of WPIW campaign • Campaign enrooted in NMOs annual activities

• WPIW used by some NMOs to outreach to their governments

• WPIW official PR used by NMOs to drive successful media activities • First contact with Rare Disease Day to link both campaigns with

view of official mutual recognition in 2013

• Promotion of WPIW at PPTA Congress with article in PPTA official newsletter distributed in all congress packs, dedicated stand, distribution of campaign materials to drive sponsorship and uptake

Snapshot of successful events

Portugal

• APDIP, Portuguese Association of Patients with Primary Immunodeficiencies

Who:

Action:

• From patient to Researcher: Meeting Patients with Primary Immunodeficiencies

• The Immune System: attributes and defects - Meeting for high school students and Immunologists

• Warning Signs for the Immunodeficiency Clinic: specialist course aimed at internal & family medicine

• First Meeting of Patients and Families with PI

• Use of translated WPIW Poster

Serbia

• Serbian Patient Organisation

Who:

Action:

• Launch of Serbian Call to Action

• Call recommends use of the 10 warning signs as a tool to support early diagnosis and access to treatment

• Media conference

Spain

• Associació Catalana de Dèficits Immunitaris Primaris

Who:

Action:

• Awareness campaign using TNT Express fleet delivery vehicles in Barcelona • PI Training Course for medical residents at the Catalan Society of Pediatrics and the

Catalan Society of Immunology • Advertising campaign in 15 OPI in the city of Terrassa • Awareness Campaign with placements on Linde Material Hadling Ibérica SA mobile

workshops w/70 vehicles were dispersed between Barcelona and Madrid • Awareness campaign with posters and leaflets across pharmacies in Barcelona, in

collaboration with the Barcelona College of Pharmacists and Pharmacy Brugueras • Advertising campaign in major hospitals in Catalonia and Primary Care Centres.

Advertising campaign in 40 establishments of Abacus Cooperative • Day out with children and adolescents with PI at the Barcelona Zoo

Morocco

• Hajar

Who:

Action:

• Awareness Day For The Public, Children's Hospital CHU Abderrahim Harouchi Casablanca

• Schools Event

• Blood Donation

• 2nd Symposium on Primary Immunodeficiencies

• Science Day Event

Iran

• Research Center for Immunodeficiencies and Children’s Medical Center, Tehran University of Medical Sciences

Who:

Action:

• Immunodeficiency Day in Iran. Paediatricians and clinical scientists invited to join

• The event included: case discussion, expert PI meeting, junior scientists meeting, panel discussion and interviews with media

• 11th International Congress of Immunology and Allergy of Iran to celebrate the WPIW. Basic and Clinical Immunologists invited to join

Egypt

• The Pediatric Allergy and Immunology Unit, Faculty of Medicine Ain Shams University

Who:

Action:

• Meeting: about BCG vaccine related complications & impact on PI, report forwarded to the Ministry of Health Committee for vaccination

• Undergraduate fifth year tutorials about warning signs of PI

• Mailing to doctors and committee members of the centres for disabled persons to raise awareness

• Media outreach

India

• Indian Patient Organisation

Who:

Action:

• CME program on PI to educate doctors, P.G. students, medical fraternity at KIMS,KIIT University, Bhubaneswar, Odisha. The program had press & media coverage

• Displayed posters, banners on PI,10 warning signs & distributed pamphlets to the general public & participants at a State sports event in Kullu (H.P.) stadium

• PI family get together with local media coverage, at Bangalore, Karnataka

Canada

• CIS, Canadian Immunodeficiency Society

Who:

Action:

• PSAs Radio Broadcast across Canada on Primary Immunodeficiency, the 10 Warning Signs and the CIS

Results of the World PI Week Questionnaire 2012 Feedback:

• Respondents happy with the activities conducted in 2012! • Majority extremely satisfied with the 2012 materials. More similar materials are

needed for 2013 (e.g. campaign video, brochures and CDs ) • Welcome additional media support (to advertise local activities) • Financial support is key in the success of these activities, more resources are needed • Government support is lacking Suggestions for 2013 theme: • Information to GPs, pediatricians, and other health professionals • Access to diagnostic facility in all regions at national level • Government involvement • Developing screening programs worldwide • "PI are NOT rare diseases“ • - Questionnaire completed by 12 NMOs/organisations -

Some respondents indicated that since its launch, WPIW has contributed to increased awareness of PI

World PI Week - Sonsorship Levels

• World PI Week Official Partner

– € 40,000

• World PI Week Supporter – € 20,000

• World PI Week Benefactor

– € 10,000

World PI Week ‘Official Partner’ Benefits

World PI Week recognition & rights: • Rights to officially associate with WPIW as an “Official World PI Week Partner” • Rights to use the “Official PI Week Partner” logo along with communication materials (press

releases, boiler plates and regular updates) • Corporate logo to appear on online, print and CD versions of the following WPIW materials:

– Poster – Check list – Email template

• Access to high-resolution digital media of all campaign materials • Recognition in PI Week Communications: • All WPIW stakeholders requested to recognize and collaborate with official partners • Company name to appear on official WPIW press releases • Eblasts to PI Community requesting affiliates to take contact and partner with all sponsors • Visibility on website: • Logos to appear on front page of website and on sponsor pages with short company description

and direct links to company web pages • PI Week – Central Team • Opportunity to engage with the PI Steering Committee and suggest ideas for leaflets, focus and

activities for the annual campaign • Direct contact with the central campaign team to help build communication and ensure successful

campaigns

World PI Week ‘Supporter’ Benefits

• World PI Week recognition & rights: • Rights to officially associate with World PI Week as an “PI Week Supporter” • Rights to use the PI Week logo along with communication materials (press

releases, boiler plates and regular updates) • Access to high-resolution digital media of all campaign materials for reproduction • Recognition in World PI Week Communications and promoted through the PI

Week website ONLY - NOT printed material • Company name to appear on official World PI Week press releases • Visibility on website: • Logos to appear on front page of website and on sponsor pages with short

company description and direct links to company web pages • World PI Week project management: • Direct contact with the central campaign team to help build communication and

share information

World PI Week “Benefactor” World PI Week recognition & rights: • Rights to officially associate with World PI Week as an “PI Week Benefactor” • Access to high-resolution digital media of all campaign materials for reproduction

Recognition in World PI Week Communications : • Company name to appear on official World PI Week press releases

Visibility on website: • Logos to appear on front page of website and on sponsor pages with short

company description and direct links to company web pages

World PI Week project management • Receive copies of all World PI Week communication: eblasts, news updates, press

releases etc.