14 April 2020
EFPIA Japan

17 April is World Hemophilia Day
EFPIA Japan is committed to supporting people with hemophilia
TOKYO—14 April 2020— 17 April is World Hemophilia Day. World Hemophilia Day wasestablished in 1989 as an international awareness day for hemophilia and other bleeding
disorders in commemoration of Frank Schnabel, founder of World Federation of Hemophilia. １
17 April 2020 celebrates 30+ years of World Hemophilia Day.
Five member companies of EFPIA Japan, namely Bayer Yakuhin, Ltd, Chugai PharmaceuticalCo., Ltd., CSL Behring K.K., Novo Nordisk Pharma Ltd. and Sanofi K.K. (in alphabetical order)
provide hemophilia treatment products in Japan and their supply accounts for roughly 70% of
the hemophilia market in the country. ２ Their research and development initiatives extend tonew hemophilia treatment options, including non-blood clotting factors and gene therapy. In
addition to the product supply and development, EFPIA Japan is committed to supporting
people with hemophilia through individual member company efforts as well as cross-industrial
initiatives as EFPIA Japan.

EFPIA Japan initiatives
EFPIA Japan Blood Products Working Team comprised of the five member companies
supports people with hemophilia and other bleeding disorders through recommendations for
effective utilization of raw blood plasma and ensuring a stable supply of blood products (1) andidentifying the present state and issues that patients with hemophilia (2) and primary immune
deficiency (3) face by conducting surveys in the patients. The collaboration among thecompanies enables EFPIA Japan to pursue cross-industrial initiatives that may not be achievedby individual companies.
(1) http://efpia.jp/link/EFPIA-J_Proposal_2nd%20Blood_Business_Committee_in_FY2018.pdf(2) http://efpia.jp/link/BlP2.pdf(3) http://efpia.jp/link/PID_J_180713_1.pdf

EFPIA Japan
ThinkPark Tower, 2-1-1, Osaki, Shinagawa-ku, Tokyo 141-6017, Japan
Tel: +81-3- 6417-2032
Fax: +81-3- 6685-4870

Individual member company initiatives
Aid to patient associations and patient support organizations
The five member companies support hemophilia patients and their families through financial
aid to National Hemophilia Network of Japan and Habataki Welfare Corporation and assistanceto local patient group activities. At a global level, the companies support people with hemophilia
in collaboration with World Federation of Hemophilia and European Haemophilia Consortium.

Product donation
In partnership with World Federation of Hemophilia and through an individual company
foundation, the companies donate hemophilia treatment products and provide training for
healthcare professionals to advance hemophilia care in developing countries with limitedaccess to care.

Global Alliance for Progress
Global Alliance for Progress (GAP) is a humanitarian program launched on World Hemophilia
Day April 2003 by World Federation of Hemophilia with the primary goal to greatly increase thediagnosis and treatment of people with hemophilia and other bleeding disorders.3 The
companies support GAP through treatment product donation and financial aid. GAP brought
about over 6.1 billion IUs cumulative increase in product supply and offered training to over
26,000 hemophilia treatment centers and healthcare professionals in developing countries. ３

Hemophilia Foundation
Hemophilia Foundation was established in 2015 to improve access to quality care for people
with hemophilia and allied bleeding disorders in developing and emerging countries. ４ To date,the Foundation has helped diagnose over 27,000 people and train more than 43,000
healthcare professionals.4

Education and exchange programs through exercise and sports
Some people with hemophilia avoid exercise because they think it may cause bleeds.5
However, regular physical activity can help prevent bleeds and joint damage.５ Exercise isimportant for hemophilia patients as well for building healthy bones and strengthening themuscles that support joints.5 To promote hemophilia patient understanding about appropriate
exercise and familiarize themselves with sports, the companies provide information about
exercise suited for hemophilia patients and offer programs to experience sports, including table
tennis, workout and futsal under the supervision of experts.

Changing Hemophilia:

https://www.novonordisk.co.jp/sustainable/society/haemophilia.html

Hemophilia Navigator:

https://csl-info.com/hemophilia-navi/dailylife/sports.html

Hemophilia Village:

https://www.hemophilia.jp/ja/home/teacher/07/

Smile-On:https://smile-on.jp/sports.html

Useful information for patients
The companies offer useful information for hemophilia patients depending on their age or life
stage and life situation through websites and printing media. Information for carriers, patientfamilies and school teachers is also available.

Club Hemophilia:

http://www.clubhaemophilia.jp/

Hemophilia Navigator:

https://csl-info.com/hemophilia-navi/index.html

Hemophilia Today:

https://www.hemophiliatoday.jp/

Hemophilia Village:

https://www.hemophilia.jp/

Smile-On:https://smile-on.jp/

Events and programs commemorating World Hemophilia Day
Hemophilia message contest:
https://www.hemophiliatoday.jp/common/images/pdf/message_contest2020.pdf
The hemophilia message contest solicits episodes associated with hemophilia from patientsand their families to share thoughts of people who live positively with hemophilia and motivatepatients to continue with treatment.

Dance content “Step by Step”: https://smile-on.jp/dance/dance1.html
Dance exercise video developed under the supervision of a hemophilia rehabilitation specialist
and a choreographer active in TV commercial choreography will be published online on 15April. The video is geared primarily toward the first to 9th graders and guides them to dance tothe music and enjoy exercise.

Hemophilia Lead: https://www.hemophilialead.net/#home
Hemophilia Lead offers leadership training to develop leaders in patient support and advocacy
for hemophilia and other bleeding disorders. The global program is aimed at people withhemophilia or a related bleeding disorder and those working in hemophilia advocacy across theglobe. Japanese people with hemophilia have also participated in the program. The coming
Hemophilia Lead will take place in June 2020.
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Workout in Hemophilia Day:
https://www.novonordisk.co.jp/sustainable/society/haemophilia.html
Video contents showing how to do simple exercises at home were released. In addition, events
that help solve questions about exercise and rehabilitation and workout together are organized.
The next event will take place in October 2020.

About hemophilia
Hemophilia is a bleeding disorder where people with hemophilia can bleed for a longer time.6
Their blood does not have enough clotting factor, a protein in blood that controls bleeding.6
About 1 in 10,000 people are born with hemophilia. ６ Hemophilia is usually inherited, while
about 30% of people with hemophilia did not get it through their parent’s genes.7 It was caused
by a change in the person’s own genes.７ In Japan, 5,410 people have hemophilia A and 1,186people have hemophilia B. ８EFPIA Japan Blood Products Working TeamEFPIA Japan represents R&D-based European pharmaceutical companies operating in Japan.
EFPIA Japan Blood Products Working Team pursues recommendations and dialogues with theJapanese Government and patient organizations aiming to contribute to better patient lives andto establish a stable supply process for medically essential plasma-derived products andrecombinant products that are manufactured with world’s most advanced technology.

About EFPIA Japan (http://efpia.jp/)
Established in April 2002, EFPIA Japan represents 22 R&D-based European pharmaceuticalcompanies operating in Japan. In 2018, combined sales from the member companies
accounted for roughly 23% of the pharmaceutical market in Japan. The mission of EFPIA
Japan is to “Contribute to healthcare and patients in Japan through the early introduction of
innovative medicines and vaccines”. EFPIA Japan aims to strengthen dialogue with decisionmakers in order to improve Japanese healthcare for all.

About EFPIA (European Federation of Pharmaceutical Industries and Associations)(http://www.efpia.eu)
EFPIA, EFPIA Japan’s partner organisation, is headquartered in Brussels and represents thepharmaceutical industry operating in Europe. Through its direct membership of 36 nationalassociations and 39 leading pharmaceutical companies, EFPIA provides the voice of4companies committed to researching, developing and bringing new medicines to improvehealth and quality of life around the world.

Contact:
Hidemi Akazawa, EFPIA Japan Public Relations Committee
1-2-3 Kita Aoyama, Minato-ku, Tokyo 107-0061
CSL Behring K.K.
TEL：03-4213-0183
Mail：hidemi.akazawa@cslbehring.com

１

World Hemophilia Foundation. Accessed in April 2020. https://worldhemophiliaday.org/

２

Sum of sales of hemophilia A, hemophilia B and hemophilia inhibitor treatment products based on

the pharmaceutical sales data in 2019 provided by Encise Inc.
３World Hemophilia Foundation. Accessed in April 2020. https://www.wfh.org/en/our-work-reg-national/gap-program
４

Novo Nordisk Hemophilia Foundation. Accessed in April 2020. https://nnhf.org/

５

Kathy Mulder. Exercises for People with Hemophilia. World Federation of Hemophilia, 2006

６World Federation of Hemophilia. Accessed in April 2020. https://elearning.wfh.org/elearning-centres/introduction-to-hemophilia/#what_is_hemophilia
７

World Federation of Hemophilia. Accessed in April 2020. https://elearning.wfh.org/elearning-

centres/introduction-to-hemophilia/#how_do_you_get_hemophilia
８Japan Foundation for AIDS Prevention. Ministry of Health, Labour and Welfare commissioned

project. National Survey in Blood Clotting Disorders 2019. Accessed in April 2020. https://apinet.jfap.or.jp/image/data/blood/r01_research/r01_research.pdf

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