레어노트

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

● What kind of service is ‘Rare Note’?

If you are not sure what information is reliable and what is the most up-to-date information after being diagnosed with a rare disease, download RareNote. Rarenote, a rare disease information platform, delivers reliable information the fastest.

1. Global News

- You can receive news articles from major media outlets related to rare diseases at home and abroad in real time.

- For those who are unfamiliar with English, overseas articles are provided in Korean.

2. Disease information

- You can check the information you need to know after you are first diagnosed with a rare disease.

- We collect and deliver reliable basic disease knowledge provided by the domestic Korea Disease Control and Prevention Agency's helpline, overseas medical professional databases StatPearls, and MedlinePlus.

3. Clinical trial status

- Information from clinicaltrials.gov, an overseas clinical trial information database, is updated in real time.

- Check clinical trial information related to your disease, new drug development progress, and expected period until treatment approval.

4. Patient meeting information

- You can check and join patient meetings and detailed activities for your disease.

- Completing the health survey data conducted by Rarenote and the patient group provides an opportunity to raise awareness of your rare disease and share it with more people.

5. News

- We will provide you with new news about my disease, such as new events, campaigns, and seminars.

- If there is any news about my disease that only I know about, please let me know on Rare Note. We will post this in the ‘News’ section so that more patients can learn about it and participate.

6. Community

- If you have any questions about symptoms, prescriptions, medications, etc., ask the patient or guardian with the same disease.

- You can also receive real-time notifications of new posts from patients and guardians with the same disease as you.

● 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, etc. to build a data registry for each rare disease.

Related article: Humanscape joins 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

Humanscape and the patient group 'Korea Multiple Sclerosis Association' are expanding treatment opportunities for the rare disease 'multiple sclerosis' 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.