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My PCR

2015 Executive Report

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Table of Contents

Executive summary………………………………………………………………………………………………..3

Background……………………………………………………………………………………………………………5

Campaign goals……………………………………………………………………………………………………..6

My PCR Rebrand………………………………………………………..……………………………………….….6

2015 My PCR Initiatives……………………………………………………………………………………….….8

PCR Campaign Grants..…………………………………………………………………………….….8

Hematology Society Grants……………………………………………………………...10

My PCR Materials Grants……………………….…………………………………………12

World CML Day “Treat Your Physician” Grants……………………………….…13

International Conferences..……..……………………………………………………………….…14

Regional Events………………..……..…………………………………………………………….…...15

Additional Campaign Statistics………………………….…………………………………………….……..16

Discussion……………………………………………………………………………………………………….……..17

Partner List…………………………………………………….……………………………………………….………18

Event Photos…………………………………………………………………………………………………….…….20

Campaign Sponsors………………………………………………………………………………………….…….23

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Executive Summary:

The My PCR (mypcr.org) is an ongoing initiative designed to raise awareness among people

living with chronic myeloid leukemia (CML), caregivers, advocates and physicians of the

importance of regular, standardized CML diagnostics and monitoring. The campaign is

directed and carried out in partnerships with 63 CML patient associations and 3 partner

networks spanning over 50 countries in the regions of Latin America, Africa, the Middle

East, Europe, North America and Asia. Since the campaign’s inception in 2012, a core focus

of the campaign has been to raise awareness through community driven efforts led by

patient associations in their local communities. To facilitate these efforts, the campaign has

developed informational tools and resources about polymerase chain reaction (PCR)

testing for the treatment and monitoring of CML that have been translated into over 25

different languages, and provides numerous grants each year to partners to strengthen

their capacity to raise awareness and advocate for access to PCR locally.

2015 was a big year for My PCR. From the addition of new grant opportunities, to a

complete rebrand of the initiative, which included a new logo, more concise messaging and

a new website, My PCR continues to expand its reach. Although My PCR is constantly

evolving to meet the needs of CML patients and advocates, the initiative continues to

maintain its core approach of supporting CML patient organizations to increase awareness

about the importance of PCR testing through strengthening patient dialogue and

engagement with physicians. This strategy was developed as a result of key findings from

2013 PCR focus groups that were conducted through My PCR to gather feedback from

advocates about challenges to access and awareness. Feedback from advocates clearly

illustrate a need for a platform for bridging the communication gap between patients and

their physicians. My PCR acts to provide that bridge. Since 2013 My PCR has offered grants

for partner groups that not only aim to raise local awareness, but aim to raise awareness

while building patient relationships with physicians. In 2015, My PCR offered the following

three grant opportunities to partners: Hematology Society Grants, PCR Materials Grants

and World CML Day “Treat Your Physician” Grants.

Hematology Society Grants provided funding of up to US$2,000 per grant for partner

patient organizations to attend a hematology society conference in their home country and

host a PCR campaign booth at the event. This provided patients with a platform with which

to engage with industry leaders, physicians and fellow patients about country specific PCR

related issues and needs. The PCR Materials Grants provided partner patient organizations

with up to US$1,000 to use to print educational materials locally about PCR. These

materials are intended to both provide information and to be used as conversation tools

for patients when they talk to their physicians about PCR in the management of CML. The

World CML Day “Treat your Physician” Grants was a new grant opportunity that was

introduced in 2015 as a tool for providing partners with the opportunity to bring a My PCR

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themed edible treat, such as a cake or candy, to their physicians along with an

informational World CML Day poster. The goal of this grant opportunity was to leverage

World CML Day to engage patients with their physicians in a nonclinical way to discuss PCR

and to build relationship.

The My PCR rebrand, which was launched in December at the 57th ASH Annual Meeting and

Exposition in Orlando, was another area of significant focus in 2015. The rebrand was

designed to provide a fresh, professional and user-friendly face to the initiative to insure

that My PCR continues to be a valuable resource for the CML community. The update

included the launch of an entirely new website with revamped, succinct messaging, and a

name change from the “What is MY PCR?” Campaign to My PCR.

The campaign was also represented at several international conferences and numerous

regional conferences and patient/physician workshops around the world. This exposure

deepened the scope of patients, physicians and caregivers exposed to the campaign, while

continuing to represent the campaign as a professional community driven initiative with a

strong presence within the global CML community.

Looking towards 2016, My PCR will focus on continuing to provide impactful resources and

tools to CML patient advocates and partner organizations. A significant area of focus will

be on creating a PCR Advocacy Toolkit specifically designed for advocates to use in their

country and region to help increase access to diagnostic testing. The elements of the

toolkit will address how to work collaboratively with physicians, how to engage with

Ministries of Health around support and funding for PCR testing, as well as how to

capitalize on existing avenues to PCR testing.

Thanks to the following campaign sponsors for their generous support: Ariad, Bristol-Myers

Squibb, Novartis, Pfizer, and Cepheid.

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Background:

There is a significant need to increase awareness among patients and physicians of the

importance of monitoring residual disease levels and understanding PCR test results. PCR

stands for ‘polymerase chain reaction’ and is a diagnostic and monitoring tool used in CML

to measure the response to treatment. It is generally one of the most sensitive ways to

determine whether a patient has CML, and it is one of the most reliable tools for

monitoring the presence of the disease in a patient once they start receiving treatment.

Because CML is a disease that usually requires lifelong treatment, regular monitoring for

disease progression is critical to achieving positive outcomes for CML patients (every 3-6

months depending on patient’s level of response to treatment).

The challenges are 1) PCR test requires diagnostic equipment that is not available in all

countries 2) not all physicians are properly trained on the importance of PCR testing for

CML patients 3) many CML patients do not understand what PCR testing is and why it is so

critical to their health.

The My PCR aims to address these challenges. The campaign is a community driven - global

awareness campaign aimed at increasing awareness among patients and physicians about

the need for patients to access PCR to regularly monitor their treatment, leading to the

optimization of clinical outcomes. It is carried out in partnership with a coalition of CML-

focused organizations, with the goal of optimization of clinical outcomes for people living

with CML.

The campaign features educational information such as FAQs about CML and PCR testing

that are translated into over 25 languages, as well as patient tools such as the My PCR

Wallet card, featuring key questions for CML patients to ask their physicians about PCR.

Partner grants to support PCR awareness events, the dissemination of educational

materials and advocate attendance at local hematology society conferences are also a key

feature. My PCR, originally called the “What is MY PCR?” campaign, was launched on World

CML Day, September 22, 2012, through a partnership among CML patient organizations

and key opinion leaders on CML.

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Photo booth photos featuring the new My PCR branding taken at the My PCR booth at the 57th

American Society of Hematology (ASH) Annual Meeting and Exposition in Orlando, FL.

Campaign Goals:

To increase patient awareness of the importance of monitoring the level of residual

disease

To increase patient understanding of the milestones in CML treatment

To increase patients’ involvement in their treatment

To increase local community awareness of the needs of CML

My PCR Rebrand:

In an effort to insure that My PCR continues to serve as a relevant and viable resource for

people living with people, the initiative underwent a rebrand in 2015 that included new

logos and color schemes, a contemporary user-friendly website (mypcr.org), and a name

simplification from “What is MY PCR?” Campaign to My PCR.

Overall, the rebrand created a refreshed image for the initiative that is:

Friendly: The new logo allows patient groups to welcome new patients with a

softer, approachable design.

Simplified: PCR is a complex subject – we wanted our new logo to speak to our

goal of making PCR understandable.

Clean: The new logo carries plenty of information – the full name, the DNA strand,

and the web address – without an overly-complicated design.

Succinct: The new brand features the new simplified name – “My PCR” rather than

“What is My PCR? Campaign”

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The new look was officially launched at the American Society of Hematology (ASH) Annual

Meeting in Orlando on December 6th, 2015. My PCR hosted a 10’ x 20’ booth at the

conference which included an 8’ x 8’ popup banner with the My PCR logo, My PCR

informational cards and stickers and a photo booth where attendees could have their

photos taken in front of a My PCR branded backdrop. The photo booth then printed and

emailed photos to the participants that included the My PCR URL and hashtags #MyPCR

and #ASH15 and participants were encouraged to share the photos via social media outlets

such as Facebook and Twitter.

The photo booth was very popular with over 300 groups and individuals participating, and

proved to be a highly effective mechanism for showcasing the new brand.

Photo booth photos featuring the new My PCR branding taken at the My PCR booth at the 57th

American Society of Hematology (ASH) Annual Meeting and Exposition in Orlando, FL.

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Rebranded Logos:

2015 Campaign Initiatives:

1. My PCR Grants

Central to 2015 My PCR vision was to continue to foster and strengthen quality discussions

between patients and physicians about the role of PCR testing in the effective monitoring

of CML and region specific PCR related needs. To this end, My PCR provided three different

types of grants for partner organizations: Hematology Society Grants, PCR Materials Grants

and World CML Day “Treat Your Physician” Grants.

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FIGURE 1: Countries in which My PCR partners received grants through My PCR in 2015

My PCR Grants Continued:

FIGURE 2: Number and percentage of My PCR grants awarded by geographical region.

Latin America, 22,

Asia , 6, 16%

Africa & Middle East, 8, 21%

Europe, 2, 5%

Country in which a partner received a My PCR grant.

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FIGURE 3: Number of individuals reached by My PCR grants.

Hematology Society Grants

Hematology Society Grants are designed to provide partner organizations with the

opportunity to attend a local hematology society conference and represent the campaign

through a booth. Representing the campaign at hematology society conferences is

particularly valuable because it provides patient leaders with the opportunity to both

educate others about PCR and learn from and talk with physicians, researchers and

industry leaders about PCR as it relates to CML locally in their region.

In total, 8 Hematology Society Grants of up to US$2,000 were awarded to partners of the

PCR campaign. Common themes that emerged from the feedback received from grantees

after the conferences included a general consensus that the booths improved dialogue

between physicians and patients, provided an important opportunity to network with

industry representatives, and increased general knowledge among physicians, patients and

industry representatives about PCR testing in the management of CML.

0

1000

2000

3000

4000

5000

6000

Patients Physicians Caregivers IndustryRepresentatives

2885

5010

450 668

Total individuals reached = 9013

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Hematology Society Conference Stats:

Partners that received a Hematology Society Grant 8

Patients Reached 2675

Physicians Reached 4487

Caregivers Reached 320

Industry Representatives Reached 668

Total Individuals Reached 8150

PCR Campaign FAQs Distributed 4000

PCR Campaign Stickers and Buttons Distributed 1750

PCR Wallet Cards 800

Hematology Society Grant Recipients:

Country: Brazil

Booth at the Brazilian Hematology, Hemotherapy and Cellular Therapy Congress

Hosted by Associação Brasileira de Linfoma e Leucemia – ABRALE

Country: Mexico

Booth at the 56 Congreso Nacional de la Agrupación Mexicana para el Estudio de

Hematología A.C.

Hosted by Asociación Mexicana de Leucemia y Gist A.C.

Country: Kenya

Booth held at the Kenya Society of Hematology and Oncology Conference

Hosted by Henzo Kenya

Country: Morocco

Booth at the ESH International Conference on Management of Haematological

Malignancies

Hosted by Association des Malades Atteints de Leucémies – AMAL

Country: Philippines

Booth at the Philippine Society of Hematology and Blood Transfusion Conference

Hosted by Touched by Max

Country: Portugal (2 grants awarded)

Booth at the European School of Hematology Conference on CML

Hosted by The Max Foundation, Association des Malades Atteints de Leucémies – AMAL,

and Associação Portuguesa contra a Leucemia

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Country: Senegal

Booth at the VIII congress de la Societe Africaine Francophone d’Hematologie

Hosted by A.G.I.L du Senegal

Hematology Society Grant Testimonials:

The PCR materials were very useful for the event audience, especially for the physicians that need

some easy and reliable information, about the PCR control, to share with their patients. The

Hematology Society Conference (Brazil) is an event focused on the medical and pharmaceutical

public, so is a great opportunity for the patient associations to talk with the physicians and

multidisciplinary professionals about patient questions. In Brazil, PCR tests are only available for

patients with private health service, and it’s only accessible on the public system by lab donation.

ABRALE is working to advocate in benefit of the public systems patients, to guaranty their right to

have the PCR control supported by the government. This opportunity was really important to our

patients.

-Associação Brasileira de Linfoma e Leucemia – ABRALE

Having a PCR booth at the ESH conference in Marrakech in January 2015 was a great experience

for AMAL association. We had the opportunity of three days to talk with physicians of

hematology departments and general medicine. We had meetings with physicians, pharma

companies and also we distributed materials to all hospitals of Morocco, Casabanca,

Marrakech, Rabat, Fez, Agadir and Tangier. Materials that we translated into Arabic were very

helpful to educate parents and patients.

- Association des Malades Atteints de Leucémies – AMAL

PCR Materials Grants

The second type of grant offered through the My PCR in 2015 was the PCR Materials Grant,

which provided funding of up to US$1,000 and are intended for any partner organization

seeking financial assistance with the translation, design, and or printing of campaign

produced educational resources about PCR testing. The goal of this grant was to insure

that every partner that wanted access to materials in their local language would have

access. My PCR succeeded in achieving this goal.

PCR Materials Grant Statistics:

Partners that received a My PCR Materials Grant 6

PCR Wallet Cards Produced 2500

PCR Campaign FAQs Produced 3500

PCR Campaign Buttons and Stickers Produced 4000

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My PCR Materials Grants Recipients:

Country: Burkina Faso

Partner: Groupe d Appui aux Survivants du Cancer

Country: Nepal

Partner: Blood Cancer Society of Nepal

Country: Guatemala

Partner: Asociación de Pacientes con Leucemia Mieloide Crónica – ASOPALEU

Country: Peru

Partner: Luz de Esperanza

Country: Slovenia

Partner: Slovenian Lymphoma and Leukemia Patient Association, L&L

Country: Tanzania

Partner: Tanzania CML Patient group

World CML Day “Treat Your Physician” Grants:

Initiated by the patient community in 2008, September 22 (9/22) has marked World CML

Day because of its symbolic significance – the disease is caused by the change of

chromosomes 9 and 22. On this day, patients across the globe come together to raise

awareness about their needs to the general public, politicians, and medical professionals

across the world. World CML Day is also a significant date for My PCR as it marks

anniversary of the initial launch of the initiative on September 22, 2012. In honor of the

third anniversary of My PCR, we launched the World CML Day “Treat Your Physician” grants

to offer partner organization up to $300 to bring a My PCR branded edible treat, such as a

cake or pie, and an information poster about CML and World CML Day to their physician.

The aim of this grant program was to encourage patients and caregivers to give back to

their physicians by bringing them a treat, and to create a space to engage in

patient/physician dialogue around PCR testing.

The other component of this grant was the grantees were required to photograph the

event with their physicians and share the photos with My PCR on Facebook and Twitter

using the hashtags #TodayTogether #WorldCMLDay #MyPCR. In doing so, they contributed

their voice to the World CML Day discussion over social media and brought the topic of PCR

for CML diagnosis and monitoring to the table.

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PCR Materials Grant Statistics:

Partners that received a “Treat Your Physician” Grant 22

Patients and Caregivers who Visited Physicians 223

Physicians that were engaged by partners 61

Photo featuring patient organization leaders from the Blood Cancer Society Nepal and their local

hematologist.

2. International Conferences

My PCR was represented at two large international conferences in 2015. In October, a My

PCR booth was hosted by The Max Foundation, Association des Malades Atteints de

Leucémies (AMAL) and Associação Portuguesa contra a Leucemia at the European School

of Hematology (ESH) – iCMLf International Conference on CML held in Estoril, Portugal. The

booth consisted of a branded 8’ x 8’ display, a full length branded tablecloth, and

informational cards about My PCR, including My PCR sponsor names, for physicians to

bring to their patients.

In December, The Max Foundation hosted a booth at the American Society of Hematology

Annual Meeting (ASH) in Orlando, Florida. This booth served as a platform to launch the

new My PCR branding and to expose international physicians, advocates and industry

representatives to the initiative. The booth was 10’ x 20’ in size and consisted of a newly

branded 8’ x 8’ popup display, branded tablecloth and photo booth with a My PCR branded

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backdrop. Informational cards, FAQs and stickers were distributed and attendees had the

option of having the My PCR branded photograph taken to share on social media. The

photo booth was very popular and over 500 individuals came to just to have their photo

taken.

3. Regional Events and Conferences

In addition to the larger international conferences listed above and the national

hematology society conferences attended by grantees, My PCR was widely represented

through independently driven partner initiatives. The campaign was represented at 11

regional meetings, congresses and patient/physician workshops in countries

throughout Latin America, Africa, and Asia. Campaign activities ranged from hosting a

PCR booth to engaging patients and physicians in deeper discussion about the importance

of PCR testing in the diagnosis and management of CML at patient organization meetings.

In total, through its presence at these partner driven regional events, the campaign

reached over 4,000 patients, 1500 caregivers and 60 physicians, both raising awareness

about PCR testing and building community among CML patients and physicians.

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Additional 2015 Statistics:

Number of partner patient associations 63

Number of partner networks 3

Number of button translations 28

Number of countries represented by campaign partners 56

Total Number of people reached by My PCR through

conferences and events

~33,250

Total number of individuals that benefitted from the campaign

through a My PCR Grant

~9,000

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Discussion:

In an effort to continue to energize the My PCR initiative and to expand its reach within the

CML community, 2015 was a year focused on revisiting and redesign the initiative’s image

and resources to effectively meet the needs of people living with CML.

The rebranding of My PCR drew significant attention from partners and supporters through

the launch of the new website (mypcr.org). In addition, 2015 marked an increase

programmatic focus on promoting My PCR via social media such as Facebook and Twitter.

Initiatives such as the World CML Day “Treat Your Physician” grants and the My PCR photo

booth at ASH were designed partially as activities that could be effectively shared and

promoted by partners and supporters online. This is particularly important as social media

provides an easily accessible mechanism for partners to engage with My PCR and promote

among their networks.

In 2015, My PCR was also highly effective at continuing to elevate the dialogue about PCR

through the provision of Hematology Society Grants and World CML Day “Treat Your

Physician” Grants. In addition to proving platforms for patient/physician engagement, the

grants provided an effective outlet for partner participation, strengthening the connection

among patient organizations with My PCR as an initiative. 7 new partners joined My PCR in

2015 increasing the partnership base by 13%, continuing the trend of growing the

partnership base each year since the initiative’s inception in 2012.

Moving into 2016, My PCR is well positioned to continue to expand its reach while

simultaneously offering relevant and user-friendly tools and resource for patient advocates

to use to raise awareness about and increase access to PCR testing in their communities.

One such resource will be a PCR Advocacy Toolkit, designed to provide a concise “how to”

guide for advocates who are working to improve access to PCR locally. In 2016, My PCR is

poised to foster not only awareness and discussion, but effective advocacy as well.

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Campaign Partners:

My PCR is designed to be a community run initiative. CML-focused groups and

organizations have been integral to its success and progression of ideas. The following is a

complete list of partner organizations by country:

AFRICA & MIDDLE EAST

Burkina Faso Groupe d Appui aux Survivants du Cancer

Africa CML Life Network (Partner Network)

Ethiopia Ethiopian CML Foundation

Egypt CanSurvive

Israel Israeli CML Patients Organization

Kenya Henzo Kenya

Lebanon CML Group Lebanon

Morocco AMAL

Niger Association de Lutte Contre la Leucémie

Nigeria MaxCare Nigeria

Senegal A.G.I.L du Senegal

South Africa CMLSA

Tanzania Tanzania CML Patient group

Togo The Association for Health Promotion and Social Well-Being in

Togo (APSBES)

ASIA

Armenia CML Patient Association Armenia

Asia Pacific Rising Sun (Partner Network)

Bangladesh Bangladesh CML Supporting Group

China Shanghai Roots & Shoots

India Friends of Max

Indonesia ELGEKA West Java

Kazakhstan Association of Patients with Hemoblastoses

Malaysia Max Family

Nepal Blood Cancer Society of Nepal

Nepal Children Cancer Foundation Nepal

Pakistan KIRAN

Philippines Touched By Max

Taiwan Taiwan Bone Marrow Transplant Association

Thailand MaxSmiles

Thailand Udon CML Supporting Group

Uzbekistan Uzbekistan CML Patients League

Vietnam Max’s Vie

EUROPE

Czech Republic Diagnoza CML

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France LMC France

Georgia The Alliance of Chronic Myeloid Leukemia Patient of Georgia

Hungary CML-GIST Betegek Egyesülete

Italy Gruppo AIL Pazienti Leucemia Mieloide Cronica

Netherlands Stitching Hematon

Poland Polish Association for CML Patients Aid

Portugal Associação Portuguesa Contra a Leucemia

Serbia CML Association of Serbia Organization

Slovenia Slovenian Lymphoma and Leukemia Patient Association, L&L

Ukraine Osanna

United Kingdom CML Support

United Kingdom iCMLf

LATIN AMERICA

Argentina ALMA

Brazil Abrale

Chile Maxi-Vida

Colombia Fundación Colombiana de Leucemia y Linfoma

Colombia La Fundación ESPERANZA VIVA

Costa Rica AGALEMO

Dominican Republic Un Paso Max

Ecuador Esperanza y Vida

El Salvador Amor a la Vida

Guatemala ASOPALEU

Honduras Asociación Hondureña de Lucha contra el Cáncer

Latin America LALNET (Partner Network)

Mexico AMELEG

Nicaragua Alas de Vida

Paraguay Funca

Peru ESPERANTRA

Peru Luz de Esperanza

Venezuela ASAPHE

Canada & USA

Canada CML Society of Canada

USA The Max Foundation

USA Leukemia and Lymphoma Society

USA National CML Society

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Hematology Society Conference and World CML Day “Treat

Your Physician” Photos:

My PCR booth at the Brazilian Hematology, Hemotherapy and Cellular Therapy Congress, hosted

by Hematology Society Grant recipient Associação Brasileira de Linfoma e Leucemia – ABRALE.

Receiving a My PCR wallet card and FAQ at a My PCR booth hosted in Morocco by Hematology

Society Grant recipient and the Association des Malades Atteints de Leucémies (AMAL).

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Patient organization leaders from Bangladesh CML Supporting Group celebrating World CML

Day by “treating” their physicians.

Patient organization leaders from Maxi-Vida celebrating World CML Day by “treating” their

physicians in Chile.

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World CML Day treats and materials delivered to physicians in Guatemala by patient

organization leaders from partner organization ASOPALEU.

My PCR booth at the European School of Hematology (ESH) – iCMLf International Conference on

CML held in Estoril, Portugal, hosted by The Max Foundation, Association des Malades Atteints de

Leucémies (AMAL) and Associação Portuguesa contra a Leucemia (APCL).

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Thank you to our My PCR sponsors:

Ariad

Bristol-Myers Squibb

Cepheid

Novartis Oncology

Pfizer Oncology