February 29th, 24
Social Survey Research Information Co., Ltd.
Social Survey Research Information Co., Ltd.
NEWS
Rare Disease Day 2024
--- Focusing on treatment gaps in rare diseases ---
Rare Disease Day (RDD) is on the last day of February every year.
The day was established to increase understanding and raise awareness of rare diseases and to improve quality of life via better diagnoses and treatments for patients and their families. The first Rare Disease Day was held in Sweden in 2008. In Japan, starting from 2010, RRD-related events have been held in many places each year on the last day of February.
What is a rare disease?
A rare disease is a generic term for diseases that a small percentage of the population has. Today, it is estimated that there are over 7,000 rare diseases globally.
In Japan, 338 diseases are designated by the Ministry of Health, Labour and Welfare as rare diseases, but there are still many patients who struggle with issues such as difficulties with diagnoses and treatments, social isolation, and comprehensive support.
Our efforts on rare diseases
We have been supporting RDD activities to help patients and their families stay connected with their communities both socially and medically since 2018, understanding the hardships and difficulties that patients who have rare diseases and their families are going through.
For RDD this year, in order to raise awareness of treatment difficulties that patients who have rare diseases are facing, we would like to present the results of our analysis which show that the treatment of rare diseases is far from sufficient compared to that of not-rare diseases. These results reflect the voices of 20,000 physicians who work in actual clinical settings and they clarify the issues with existing treatments for rare diseases.
We truly hope that the results of our analysis will help you better understand rare disease treatments, further the study of these diseases, and develop treatments and seek more effective measures.
[Analysis of physicians' complaints about existing treatments --what the PatientsMap data show--]
The following figure shows the results of the analysis of physicians' complaints about existing treatments for roughly 400 diseases from hypertension and pollen allergy, with many patients, to rare diseases.
In closing
As we empathize with the philosophy behind RDD, we will continue to collect, analyze, and communicate what we learn about rare diseases in order to help patients and their loved ones connected with their communities both socially and medically and to improve treatment and social support for them.
As we empathize with the philosophy behind RDD, we will continue to collect, analyze, and communicate what we learn about rare diseases in order to help patients and their loved ones connected with their communities both socially and medically and to improve treatment and social support for them.
Contact Information
| Social Survey Research Information Co., Ltd. | ||
|---|---|---|
| : | patientsmap@ssri.com | |
Social Survey Research Information Co., Ltd.
| Established | April 1982 |
| Capital | 27 million JPY |
| President & CEO | Takashi Makita |
| Number of employees | 137 |
| Location | Head Office NMF Shinjuku East Bldg. 2F, 3F 10-5 Tomihisacho, Shinjuku-ku, Tokyo 162-0067 JAPAN |
| Osaka office Daimei Bldg. 4F, 4-6-3 Hirano-cho, Chuo-ku, Osaka 541-0046 JAPAN | |
| Affiliate companies | PD Research Co., Ltd. MDB Co. SSRI China Co., Ltd. (overseas subsidiary) SSRI Asia Pacific Co., Ltd. (overseas subsidiary) HIMA Research (overseas affiliate) |
| URL | https://www.ssri.com/ |