Diagnostic Consortium to Advance the Ecosystem for
Hereditary Angioedema
Annual Report for 2021

≪ Contents ≫1.

About us➢➢➢2.

Activities

Goal of the activities
Major achievements

Activity goal for 2022➢➢
4.

GoalAchievements in 2021➢➢
3.

Organization overview

Goal
Key activities and roadmap

Financial condition**Only Japanese1≪ Main Story ≫1. About us⚫

Organization overview
Our association is working with a diverse range of stakeholders, including physicians*¹, patientorganizations, IT companies, and pharmaceutical companies, in a cross-industry approach toearly diagnosis and improvement of the diagnosis rate of HAE.
*1 The photos represent physicians. For the affiliation of each doctor, please refer to the Official Website of theAssociation.

*2 The HAEJ and くみーむ are both HAE patient associations.

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Goal
Our association is still under-recognized among the public and among healthcare professionals, andHAE diagnosis is less likely to be identified as a result.
Our goal is to achieve early diagnosis and improvement of the rate of diagnosis of HAE within
five years. In the first year, we will build a promotion system and develop solutions. In the third yearand beyond, we plan to expand the scale of measures and implement them regularly.

⚫

Activities
Because HAE is a rare disease, it is often under-diagnosed due to low awareness of the disease bydoctors and patients. Our association is working to address issues through three working groups(WGs) to improve the early diagnosis and diagnostic yield of HAE.

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≪ WG1 Medical Data AI Analysis ≫In WG1, we will use medical big data to identify HAE patients based on electronic medical recordsand receipts, and provide diagnosis support through artificial intelligence . Using this AI, we
aim to reduce the number of undiagnosed patients by reducing the omissions of "HAE" in daily
medical care, and by building a system that detects suspected patients from big data such asreceipt data and encourages them to visit specialized medical institutions.

≪ WG2 Non-Specialist * 1 Diagnostic Support ≫As a diagnostic support activity for medical professionals including non-specialist doctors, WG2
opens a special HAE webpage in the doctor web community, which accounts for 40% of
domestic doctors, and will hold several seminars at medical societies. In addition, we will
promote early and appropriate diagnosis of doctors by utilizing a remote consultation systemand building a mechanism that allows doctors to consult doctors who are familiar with HAE.

*1: A doctor who is not certified by the Japan Council for the Evaluation and Certification of MedicalSpecialists, but has been dedicated to the treatment of HAE and patient support for many years*2: A special disease page will be set up in MedPeer to disseminate information and enable consultation
using "Meet the Expert" in MedPeer, the existing web community.
*3: Enable consultations using Integrity Healthcare YaDoc Quick4≪ WG3 Disease Awareness Program for Undiagnosed Patients ≫Through the website, WG3 provides information to help people recognize that they may have
HAE, whilst also emphasizing the importance of testing the patient's family. By doing so, we aim
for patients and their families to visit medical institutions with a greater peace of mind.

52. Achievements in 2021⚫

Goal of the activities
In 2021, in addition to establishing operating infrastructure and promotion system, we also
welcomed IT partners who provide digital solutions, and set the goal to develop solutions andconduct partial demonstration tests for development and social implementation in 2022 andbeyond.

⚫

Major achievements
IBM Japan, Ltd., Integrity Healthcare Co., Ltd., Medpeer Co., Ltd., and VMLY&Rx, which haveextensive experience in the development and deployment of digital solutions in the medical industry,joined each WG to prepare and verify each measure, while corporate management focused on public
relations activities.

6≪ Consortium Management ≫➢➢We have established basic rules to facilitate smooth operation of the consortium.
We carried out press releases at the time of our establishment with participation of ITcompanies, which were introduced in up to 90 media outlets. In addition, an interview article
between our representative director and Deloitte Tohmatsu Consulting GK, which serves as
the secretariat, was published in Harvard Business Review, and an interview article of ourrepresentative director was published in Pharmaceutical Affairs News.

➢We opened Twitter, (@ discover0208) and and Facebook to raise awareness of HAE insociety through information dissemination of our association activities. Please follow us.

➢We are promoting interviews with mass media including key TV stations to improverecognition of HAE.

➢We received a donation from Analog Devices Inc. for our efforts to contribute to ESG.

≪ WG1 Medical Data AI Analysis ≫➢We acquired US medical data as the first data for the development of the initial AI model.

➢Based on the medical field knowledge on HAE and the key points for diagnosis, we started
AI development in cooperation with IBM Japan, Ltd.

➢In order to implement AI society after 2022, we have started cooperative negotiations ofAI implementation with medical institutions and companies with electronic medical recordsystems.

≪ WG2 Non-specialist Diagnosis Support ≫➢In order to raise the awareness of HAE diseases among physicians, we conducted awarenessactivities in the platform MedPeer, prepared a special disease page for physicians, andstarted writing articles such as “Points for HAE diagnosis. ”.

➢In order to support the diagnosis of HAE by physicians, we have started a demonstrationtest of a remote consultation service between physicians in cooperation with the Societyof Dental Medicine for the Diseased and related physicians. In recent years, the demand forremote consultation has been increasing due to the effects of infectious diseases, and we
received an announcement that 19 doctors will participate in the demonstration experiment.
For remote consultation, we used the online medical care system "YaDoc Quick" of Integrity
Healthcare Co., Ltd.

➢Based on the interviews with the physicians concerned, we identified the medical departments
where the need for HAE recognition was high and formulated a plan for measures to improvedisease recognition at relevant medical societies.

7≪ WG3 Disease Awareness Program for Undiagnosed Patients ≫➢We listened to the issues and requests related to HAE disease awareness from the member
NPO, HAEJ, the HAE patient association, and the pharmaceutical companies, and examinedthe contents of the disease awareness website.

➢The WG Leaders, Dr. Anne Beverley Yamamoto, Director of our association (Representativeof the NPO HAEJ), and VMLY&Rx. cooperated to start creation of contents for diseaseawareness website.

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3. Activity goal for 2022⚫

GoalIn 2022, we will devote ourselves to corporate public relations and promote development and social
implementation of policies that we have already prepared. WG1 will work on social implementation ofAI, WG2 will work on publication of MedPeer disease special page, social implementation of remoteconsultation, and measures to raise awareness of HAE in medical societies, and WG3 will work on
publication of the disease awareness website to raise awareness of HAE among healthcare
professionals and undiagnosed patients.

⚫

Key activities and roadmap≪ Corporate Management ≫➢We will promote interview with mass media and program production
companies, including key TV stations, to raise awareness of HAE diseases.

➢In the lead up to HAE Day in May, we plan to implement disease awarenessmeasures using SNS and the web*.

≪ WG1 Medical Data AI Analysis ≫➢In cooperation with the WG Leader physician and IBM Japan, we will analyze
the aforementioned US medical data and promote AI development byOctober (planned).

➢In parallel with AI development, for social implementation, we will proceedwith negotiations towards AI implementation with medical institutions,companies with electronic medical record systems, and health insurance
societies.

≪ WG2 Non-specialist Diagnosis Support ≫➢A Disease Special Page in MedPeer will be launched (planned for March). In the first article,
the WG Lead Physician explains the diagnostic points of HAE which can be easily
misdiagnosed.
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We will verify the effectiveness of the remote consultation demonstration project andimprove the operation and system aspects. After that, we will promote social
implementation (scheduled for August).

➢The aim is to raise awareness of the disease through publicity activities such as seminars
and poster displays at medical societies for internal medicine and dentistry.

≪ WG3 Disease Awareness Program for Undiagnosed Patients ≫➢We will launch a disease awareness website (scheduled for March). In the initial content,
the disease outline of HAE, precautions in daily life, medical expense subsidy system, etc.
are introduced.

➢After the launch of the website, we will consider measures to raise awareness of diseases
other than through the web in order to increase the recognition rate of HAE in generalsociety through various approaches. We will conduct interviews with a wide range ofstakeholders, including WG leaders, physicians, the NPO HAEJ, the HAE patient association,and pharmaceutical companies, and reflect their diverse perspectives.

104. Financial condition (only Japanese)

2021 年度決算報告書
自 2021 年 2 月 8 日
至 2021 年 12 月 31 日

一般社団法人 遺伝性血管性浮腫診断コンソーシアム

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