레어노트

The fastest way to access rare disease information from around the world

● What kind of service is ‘Rare Note’?

1. Provision of rare disease information

- Global News: You can receive real-time news from major media outlets related to rare diseases at home and abroad. Foreign articles are provided in Korean to make them easier to read.

- Disease information: Provides essential information that people diagnosed with a rare disease for the first time need to know. We collect and deliver basic knowledge from trusted organizations such as the Korea Disease Control and Prevention Agency Helpline, StatPearls, and MedlinePlus.

- Clinical trial status: Information on clinicaltrials.gov, an overseas clinical trial database, is updated in real time, allowing you to check disease-related clinical trial information, new drug development progress, and expected treatment approval period.

- Patient group information: You can check and join the activities of patient groups with the same disease. You can also contribute to raising awareness of rare diseases by participating in the health survey conducted jointly by RareNote and the patient group.

- News: You can receive the latest information on disease-related events, campaigns, seminars, etc., and share new news on Rarenote so that more patients can learn about it.

2. Community

- If you have any questions about symptoms, prescriptions, or medications, you can ask questions to patients with the same disease or their guardians.

- You can receive real-time notifications of new posts from patients with the same disease and their guardians, allowing you to share information and experiences immediately.

3. Pharmaceutical cost support program

- This is a program that covers a portion of pharmaceutical costs with support from sponsors only for patients with specific diseases who have been recommended by their doctor. Those who meet the application criteria can apply.

- You can easily apply for pharmaceutical expense support and receive subsidies through the Rarenote app.

4. Medication/medication management program

- This is a program that helps patients who use the sponsor's medications manage their medication and medication administration more systematically.

- With medication/medication reminder, postponement, and medication/medication completion record functions, you can administer or take medication according to a set schedule and effectively manage disease and pain.

5. Recommend a welfare system that suits my conditions

- If you need financial or living support to use the sponsor's medication, you can check the welfare support system that is suitable for you by entering simple information such as income, assets, and residential area.

● Why does ‘Rare Note’ do this?

Rare Note works to solve various problems for patients with rare diseases. Ultimately, our goal is to expand treatment opportunities for patients with rare diseases.

Rare Note not only resolves the ‘lack of information’ for rare disease patients, but also contributes to expanding treatment opportunities for patients by working with patient groups, medical staff, and pharmaceutical companies to build a rare disease data registry.

Related articles:

[**Humanscape, joined hands with Hana Bank and the Korea Rare and Incurable Diseases Association to participate in the project to build rare disease ‘patient health data’](http://www.hitnews.co.kr/news/articleView.html?idxno=50922)**

http://www.hitnews.co.kr/news/articleView.html?idxno=50922

[**Humanscape, together with the patient group ‘Korea Multiple Sclerosis Association’, expand treatment opportunities for the rare disease ‘multiple sclerosis’**](http://www.hitnews.co.kr/news/articleView.html?idxno=46898)

http://www.hitnews.co.kr/news/articleView.html?idxno=46898

● Inquiries

Please send an email to [email protected]. The Rarenote team awaits various suggestions and opinions from medical staff, pharmaceutical companies, patient groups, and patients/guardians.