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What is 'RareNote'?

1. Information on Rare Diseases
   • Global News: Receive real-time updates on major news related to rare diseases from domestic and international media outlets. Articles from abroad are available in Korean for easier reading.
   • Disease Information: Essential information for individuals newly diagnosed with rare diseases is provided, including resources consolidated from reliable institutions such as the Disease Control Center helpline, StatPearls, and MedlinePlus.
   • Clinical Trial Status: Access real-time updates from the clinicaltrials.gov database to learn about ongoing clinical trials, new drug development progress, and anticipated approval timelines for treatments.
   • Patient Community Information: Check activities of patient groups dealing with the same condition and join them. Contribute to increased awareness of rare diseases by participating in health surveys conducted in collaboration with RareNote and these groups.
   • Updates: Stay informed on the latest news regarding disease-related events, campaigns, seminars, and share new information with RareNote to help reach more patients.
2. Community Engagement
   • If you have questions about symptoms, prescriptions, or medications, you can ask other patients or caregivers dealing with the same condition.
   • Receive real-time notifications of new posts from patients and caregivers with the same illness, allowing for immediate sharing of information and experiences.
3. Medication Cost Assistance Program
   • This program provides financial support for medication costs to select patients recommended by their primary care physicians, funded by sponsors. Eligible individuals can apply based on established criteria.
   • Easily apply for medication cost assistance through the RareNote app and receive support financially.

Why Does 'RareNote' Undertake These Initiatives?

RareNote is dedicated to addressing numerous challenges faced by patients with rare diseases. Our ultimate goal is to expand treatment opportunities for these patients. We not only aim to alleviate the 'information gap' encountered by individuals with rare diseases but also actively collaborate with patient organizations and medical professionals to establish disease-specific data registries that enhance treatment prospects.

Related Articles:

• Humanscape collaborates with Hana Bank and the Korea Rare Disease Association to participate in building health data for rare disease patients
• Humanscape partners with the Korean Multiple Sclerosis Association to expand treatment opportunities for multiple sclerosis

Inquiries

Please contact us at [email protected]. The RareNote team welcomes various suggestions and feedback from healthcare professionals, pharmaceutical companies, patient organizations, as well as patients and caregivers.