[Peer Harmony] The challenge of delivering the voices of patients with rare and incurable diseases to society – 5th “Patient Speaker Lecture” 1st anniversary special edition held
*Peer Harmony*
Press release: September 13, 2024
The challenge of delivering the voices of patients with rare and incurable diseases to society – 5th “Patient Speaker Lecture” 1st anniversary special edition held
*Peer harmony initiative in collaboration with patient associations to uncover overlooked patient voices*
* The challenge of peer harmony to deliver the real voices of patients to society *
Peer Harmony Co., Ltd. is working with patient associations to carry out support activities in order to widely hear the voices of patients with rare and intractable diseases, who are often overlooked. In particular, we are strengthening efforts to operate online communities and address the lack of funds and information faced by patients and their families, and serve as a bridge between society and medical institutions.
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“Peer Harmony Co., Ltd. held a special edition to commemorate the 1st anniversary of the “Patient Speaker Lecture” with the aim of widely disseminating the voices of patients with intractable and rare diseases to society.”This 5th lecture A moving speech and roundtable discussion were held by three patient association representatives, who shared wisdom and positive messages about living with an incurable disease. Through these events, Peer Harmony responds to the “unmet needs” of patients and develops activities that serve as a bridge between medical institutions and society. .
5th Patient Speaker Lecture Speakers and Theme
Yuki Kitsunesaki
Representative of M-N Smile, multiple sclerosis/neuromyelitis optica patient association
Kazuyuki Miyamura
Chairman of the Interstitial Pneumonia Patients Association
Satomi Momoi
Representative of Scleroderma Patient Association Linkage
At this lecture, three patient association representatives took to the podium and each shared their wisdom and stories about how to live a positive life while facing an incurable disease.
Yuki Kitsunizaki (Representative of M-N Smile, multiple
sclerosis/neuromyelitis optica patient association)
* Theme: “The secret to smiling even with incurable diseases” * Based on her own medical history and experience, Ms. Kitsunesaki introduced three secrets to smiling and staying positive.
“Don’t get caught up in the word ‘incurable disease'”, “Don’t keep apologizing”, “A smile brings happiness”
This speech conveyed the importance of a positive attitude and a smile in the face of incurable diseases, and deeply impressed many participants.
Kazuyuki Miyamura (Chairman of Interstitial Pneumonia Patient Association “Ichigo Ichie”)
* Theme: “With collagen disease” *
Mr. Miyamura specifically shared his medical history and treatment experience, and also touched on the marker KL-6 and the importance of the 6-minute walk test. Based on the philosophy of “once in a lifetime, once in a lifetime,” he talked about how patient
association activities support patients’ lives and foster a positive mindset, and the content was filled with useful advice for many patients.
Satomi Momoi (representative of the scleroderma patient association “Linkage”) * Theme: “Connect, connect, change the future” *
Mr. Momoi explained his experience in an easy-to-understand way using comics and emphasized the importance of mutual support among patients. In particular, with the slogan “Connect, Connect, Change the Future,” Linkage’s peer support activities were a major step towards the future.
Highlights of the roundtable discussion (Thinking as a patient association representative – A path for patients and doctors to grow together -)
Theme 1: Communication between patients
We asked them about the most memorable events and feelings they had while interacting with other patients.
Reasons why young patients hesitate to use canes or wheelchairs and avoid applying for disability certificates were discussed. It was pointed out that social prejudice influences these behaviors, and the importance of obtaining correct information was emphasized at the patient meeting. It was stated that interaction between patients helps alleviate feelings of isolation, and that receiving appropriate treatment can greatly change a patient’s future.
Theme 2: Communication with medical professionals
We asked them to share what challenges they face when it comes to communicating with medical professionals.
Discussions included the difficulty of communicating information during a short consultation time and the awkwardness of seeking a second opinion. At patient meetings, we recommend that you organize your questions in advance of your consultation.
It was also suggested that it is important to rely on medical mediators and other health care professionals when doctors do not listen, and that patients with chronic illnesses also need this type of support.
Theme 3: For better communication between medical professionals and patients The importance of shared decision making (SDM) for patients and healthcare professionals to grow together and find the best treatment was discussed. He emphasized that in order to build good relationships with doctors and nurses, it is important to understand and respect each other’s positions. He stated that treatment is a partnership between the doctor and the patient, and that treatment can proceed smoothly if both parties cooperate. The importance of patients thinking carefully about what they want to do and communicating that to their doctors was emphasized.
Peer Harmony Co., Ltd.
Peer Harmony’s mission is to deliver the voices of patients to medical professionals and pharmaceutical companies.
We have established an online platform to support patients with rare and incurable diseases and their families, and through support of existing patient associations, we aim to create a society where patients with incurable diseases are not isolated.
We aim to use the insights we gain to collaborate with pharmaceutical companies and other parties to understand patient needs and contribute to the development of new drugs through the collection of new insights and clinical trial support services.
Contact us
*To the media:*
Peer Harmony is actively developing activities to convey the voices of rare disease patients to society through strong collaboration with patient associations and holding events. For inquiries about introducing our services or interview/event coverage, please contact us below.
[Contact information]
Peer Harmony Co., Ltd.
Person in charge: Yuta Fukai
Email: info@peerharmony.com