RD Workers, Working with Intractable Diseases, Update Japan's Work Styles

Our company endorses April Dream, an initiative to make April 1st a day for expressing dreams. This press release is a dream of "NPO Ryoiku World."

NPO Ryoiku World (Location: Shinjuku-ku, Tokyo https://ryoiku.org/) proposes a new concept, "RD Worker (Rare Disease Worker)," which refers to people working while living with intractable diseases or chronic illnesses, and aims to make this term a common language in society. We aim to realize a future where all people who wish to work can connect with society while valuing their individuality.

■ The Dream We Want to Realize, and Its Background: The Hidden "Iceberg" and "Three Rares"

In modern society, people with intractable diseases often fall through the cracks of existing support systems. We liken this situation to an "iceberg model." Beneath the surface of diagnosed intractable diseases, there are many people suffering from symptoms, regardless of diagnosis.

They face the following "Three Rares (shortages)":

1. Lack of support systems: Many cases fall outside the scope of disability certificates, making public support difficult to reach. 2. Low social recognition: Fluctuations in physical condition, not visible externally, are often not correctly understood by those around them. 3. Limited work options: Forced into a choice between "full-time or retirement," they cannot choose flexible work styles that suit their physical condition.

The employment rate for people with intractable diseases who suffer from strong chronic symptoms remains at only 32%*, and many lose connection with society despite their desire to work. *From the 2021 White Paper on Social Participation of People with Intractable Diseases

■ Our Initiatives: To solve this problem, we are developing the following activities.

### 〈Support through Tools〉

Deepening Mutual Understanding with "RD Compass" and "My Instruction Manual"

- RD Compass: A mutual understanding support service connecting intractable disease workers (RD Workers) with their workplaces. It creates an environment where companies and support organizations can correctly grasp the individual's situation and provide appropriate consideration. - My Instruction Manual: A tool to verbalize one's health fluctuations and necessary considerations, facilitating smooth communication in the workplace. - RD Log: An app that visualizes daily physical condition and work load. Based on data, it proposes sustainable work styles.

### 〈Awareness and Advocacy Activities〉

Proposals for a Sustainable Coexistence Society

- Local Councilors Study Group: Held 6 times, leading to over 40 parliamentary questions in 20 municipalities, expanding the employment of intractable disease patients in local governments. - Publication of "2025 White Paper on Social Participation of People with Intractable Diseases": 4,050 copies of the white paper were published, and approximately 3,800 copies were distributed nationwide. - Awareness Activities: Seminars (for companies, universities, high schools), speaking engagements, media development.

■ Our Future Vision: A Society Where Three Employment Types Are Normal

Our dream is for "RD Workers" not to be a special existence, but one of diverse options, becoming a normal way of working. By organizing them into the following "three employment types," we aim to alleviate anxiety for both individuals and employers and to promote flexible work styles.

1. "Loose-Flexible": A work style that gradually adjusts duties according to physical condition. 2. "Moderately-Flexible": A work style that combines reduced hours and remote work to contribute stably. 3. "Intensely-Flexible": A work style that performs high-load tasks during periods of concentration and takes flexible rest.

By spreading the "RD Worker" work style throughout society, we aim for a future where people with intractable or chronic diseases can connect with society while respecting their individuality.

■ Message from the Chairperson

Due to advances in medicine and technology, "intractable diseases and employment" are entering a new era of possibilities. In recent years, flexible hiring cases have increased in local governments and private companies, and national systems are also in a period of reform.

However, issues such as "gaps in the system" and "discrepancies between reality and image" remain deeply rooted, and excessive anxiety and consideration regarding the term intractable disease are narrowing the options for those affected.

Like the "young carers" of the past, we are advocating for the term "RD Worker (Rare Disease Worker)" and aiming to make their existence visible. A society where people with disease-related constraints can work easily should also be a society where people with all kinds of circumstances, such as childcare and elderly care, can work easily. We expect RD Workers to be the ones who present the next generation's "new work style" to society.

### 【About NPO Ryoiku World】

Aiming for "a society where everyone can live as they wish," we conduct awareness and advocacy activities to promote the social participation of people with intractable diseases. URL: https://ryoiku.org/