RareGuru: Rare Diseases 12+
Caregiver & Patient Community
RareGuru, LLC
Designed for iPad
-
- Free
Screenshots
Description
Upgrading to v2? If you're returning from v1, please reset your password using the 'Reset your password' button to enjoy our new features with a fresh start!
If you’re suffering from a rare disease or chronic illness or a caregiver for someone who is, you’re not alone. Connect with other patients and caregivers, learn about your condition, and share your story on RareGuru.
RareGuru is a free mobile app that connects caregivers, parents, and patients with similar rare diseases or symptoms. Take back control of your health and future by finding the resources and the social health group you need to thrive.
Connect with knowledgeable and motivated patients and caregivers like you. Track your symptoms, share your diagnosis, learn more about your disease and help others through their healing process.
Get support from people who share your disease. Find and show support for chronic diseases, depression, symptoms and more with a network of patients and caregivers.
Share as much or as little about yourself and your condition as you’d like. Whether you have a chronic illness, newly identified disease or a mental disease, what you share with whom is your decision.
Don’t let your disease isolate you from the world. Connect and learn together with RareGuru.
RareGuru Features:
Connect, Share & Network
- Create a private or public profile sharing what information you’re comfortable with.
- RareGuru matches you with other users who share a similar diagnosis or symptoms.
- Filter your matches based on location, age, gender, and user type.
- Message through private or group chats.
- Safe and secure social networking.
Symptom Tracker
- Track symptoms and take notes to evaluate your condition.
- Export data trends for sharing with doctors and specialists
Rare Disease and Chronic Illness Database
- RareGuru’s disease database contains up to 7,000 rare diseases and chronic conditions and more than 21,000 symptoms.
- The disease database is regularly updated based on data from the United States Genetic and Rare Disease Information Center (GARD).
- Diagnoses not yet in the disease database earn a unicorn icon to indicate the rarity.
.Global Disease map
- Search the global disease map to see where certain diseases are more or less rare.
- Find out how many RareGuru users share your diagnosis in any location.
Rare Charities
- RareGuru spotlights organizations serving the rare disease community.
- Users can select their favorite rare charities during onboarding.
RareGuru helps connect and support those experiencing rare diseases. Download today and join us.
What’s New
Version 2.0.0
What's New in Version 2.0 - A Fresh Perspective
We're thrilled to unveil the next chapter in our journey - Version 2.0 of RareGuru. This isn't just an update; it's a complete transformation, envisioned from the ground up to enhance your experience, streamline your navigation, and broaden your horizons. Here's what's new:
Sleek, New Design: Dive into a world where elegance meets functionality. Our app has been completely rewritten to introduce a fresh look and feel, ensuring a more intuitive and engaging user experience.
Enhanced Navigation: The introduction of a universal app drawer makes accessing your profile, preferences, and settings easier than ever. It's all at your fingertips, providing a seamless journey through the app.
Revolutionized Disorder and Symptoms Management: We've reimagined how you manage disorders and symptoms. Our goal? To provide you with the tools you need for better management, understanding, and control.
Symptom Tracker, Reimagined: Say hello to a new level of tracking with our improved symptom tracker. Now, you can log multiple symptoms within a day, edit past entries, and view your symptoms over any given period. It's empowerment at its best.
Explore Like Never Before: Discover and connect in new ways with our Explorer feature. Search profiles or filter by disorder to find exactly what you want. It's your journey, personalized.
Map Interface, Redefined: Navigate confidently with our new map interface, featuring improved markers that help you explore new insights about the rare disease community.
Chat, Enhanced: Communication is key, and our new chat interface makes it more dynamic. Add images, share links, and engage in conversations that matter.
Groups, Reimagined: Whether you're looking to join a public group or create a private sanctuary, our new group interface provides the platform to connect and share with others who understand.
Smarter Matching Algorithms: Our improved matching algorithms now deeply consider your preferences, ensuring more accurate and meaningful connections.
This version represents a leap forward, a testament to our commitment to innovation and continuous improvement. Your feedback has been instrumental in shaping this update, and we're excited for you to experience the enhancements firsthand.
Update to Version 2.0 today, and transform how you engage with RareGuru. Here's to new beginnings!
Ratings and Reviews
66 years to get diagnosed
I wish getting a diagnosis was as easy as using RareGuru. It was easy to set up and start matching with others. I have been diagnosed with several chronic conditions (all also in the app) but only recently diagnosed with a rare genetic disease after several family members were diagnosed. Turns out I’m the real patient zero 😆 now all of my other common conditions and symptoms are starting to trace back to my rare diagnosis. It took me 66 years to get this diagnosis and I’m glad to have this app to connect with others like me. I feel less isolated and more hopeful.
Developer Response ,
GardenGrams, you are on point! While all rare diseases are unique, the path to diagnosis is shockingly common. The average time it takes for patients to receive a rare diagnosis is 4.8 years, and 95% of rare diseases lack an FDA approved treatment. We hope RareGuru will empower users like you to help others eliminate the time, frustration, and isolation that usually accompanies a rare diagnosis.
Positive community and resources
This is such an inspirational app. I love the idea of bringing together isolated individuals and groups in the rare disease community to share and learn in a positive environment. This is what the internet was made for! After reading the founder’s story and some of the other shared stories on the blog, I’m really excited to see how this app grows. This has potential to be life changing for those of us who care for others or who suffer from a rare disease ourselves.
Developer Response ,
Binary Hipster, thank you for your feedback! We too are inspired by the users who have shared their stories on our blog. They show that although the diseases themselves are unique, families living with them share a very similar determination to find out as much as they can about their diagnosis and use that information for their care. We love that you found RareGuru and know you will be a valuable member of our community. Stay well.
Dream come true
As someone with a rare disease that affected about 1 in 100,000 to 1 million people I’ve been looking for a platform to connect with others with the same thing and a place to track when my symptoms aren’t regular! If I could rate this 10 stars I would. Everyone needs to know about this app!
Developer Response ,
Smumps You are one in a million and we are so happy you found RareGuru! We are so thankful for your feedback and for you being here to help us form our community of support. Thank you!
App Privacy
The developer, RareGuru, LLC, indicated that the app’s privacy practices may include handling of data as described below. For more information, see the developer’s privacy policy.
Data Linked to You
The following data may be collected and linked to your identity:
- Health & Fitness
- Contact Info
- Identifiers
- Usage Data
Data Not Linked to You
The following data may be collected but it is not linked to your identity:
- User Content
- Diagnostics
Privacy practices may vary, for example, based on the features you use or your age. Learn More
Information
- Seller
- RareGuru, LLC
- Size
- 37.8 MB
- Category
- Medical
- Compatibility
-
- iPhone
- Requires iOS 14.0 or later.
- iPad
- Requires iPadOS 14.0 or later.
- iPod touch
- Requires iOS 14.0 or later.
- Mac
- Requires macOS 11.0 or later and a Mac with Apple M1 chip or later.
- Languages
-
English
- Age Rating
- 12+ Infrequent/Mild Medical/Treatment Information
- Copyright
- © 2024 RareGuru, Inc.
- Price
- Free