RareGuru User Reviews

RareGuru: Rare Diseases
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I'm almost in tears, this has been such a touching experience.

I've spent years with minor gripe that seemed just a bit abnormal for my age but I also wasn't the nicest to my body when younger so I dismissed them.

I came to find Rare Guru through an article I read, and really thought nothing of it at first besides it being a neat idea and my own experience in tech and frustration about my medical issues.

I've had a suspicion that I had something weird aka rare that was not being diagnosed. Well thanks to the article which feature this app and its founders, I asked for a lab test that probably nobody would ever have ordered because I don't fit the clinical profile. I mean, almost not at all.

Turn out it's abnormal and highly suggestive of hypophosphatasia.

There are 10s of thousands of people using this app, and the founders took time to talk to me through the app and even a video conference and provide me with lots of info since it is something they are familiar with.

My mind is truly blown. I finally have some answers for decades long questions that I probably would not have ever found was it not for that article and the story of Heather, her daughter and the app they created.

I know this review isn't really about the features of the app, but since I work in the internet tech space, let me just say that it's not the features and functionality or lack of bugs that make a great app.

It's whether it is effective for its intended purpose. I am one fretful individual who has proved that truly is the core of this app. It has been proved effective and I get to join an exclusive club of about 500 out of 330,000,000 people with this diagnosis. Let that % sink in. I'm off to buy a lottery ticket now.

Thank you, Heather, Bennett and family!
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MysteryShopper12MysteryShopper12

Amazing App

This app has solved so many problems for me. From connecting me to symptoms to helping me find a community, RareGuru has been a lifesaver.
galaxy sloth!!!,galaxy sloth!!!,

Response from developer

galaxy sloth, we love you more! Thank you for your review, feedback and for being one of our very first rare gurus. Please explore the RareGuru app, make new connections and give us a shout out if you think of ways to make our app better for those living with a rare disease or chronic illness. Stay well and welcome to the RareGuru community!

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!
smumpssmumps

Response from developer

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!

RareGuru Is A Must

Wow I love RareGuru. You select your diagnosis and or symptoms if you wanna list your symptoms, then you get a selection of connections based on the information in your profile. You can make the list of your symptoms public or private and there’s even a symptom tracker. There’s no newsfeed or posting. Once you send a connect request and it’s accepted you get to talk one on one. So it’s like a community of people who share your diagnosis or symptoms with one on one emotional support through those good and bad days. I’d highly download RareGuru cuz here on RareGuru you aren’t alone. If someone doesn’t share your diagnosis or symptoms that you know of, then download RareGuru and I promise there’s people out in the world. You just haven’t met them yet but on RareGuru you will.
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Huge dice fanHuge dice fan

Response from developer

Huge dice fan, we are a huge fan of you! You have found your village and we're thankful that you will be here to welcome future RareGuru users with similar diagnoses and symptoms. Thank you for your feedback and for taking the time to write a review. Please reach out to us with any ideas to enhance the app for future builds. Stay well!

happy 2 find teens like me

This app is rlly cool and I was so relieved 2 find other teens like me! IDK that there was an app like RG!!!! It’s so cool and is very sleek and easy 2 use. It has helped me to DM other people going through the same stuff as me. I don’t feel so alone ⭐️ ⭐️ ⭐️ ⭐️ ⭐️
war man 2war man 2

Response from developer

War man 2 we hear you and teens are an important part of our community. You are not alone and we hope you make lifelong connections with other teens who are on similar journeys. Thank you for your review and let us know if you have any ideas or suggestions for the app. Stay well!

Genius!

As a healthcare professional I can’t say how much this app was NEEDED!!! So helpful on so many levels even if you don’t have a rare diagnosis. Thank you for bringing this into existence!
PediatricDentalViewPediatricDentalView

Response from developer

Thank you for your kind words PediatricDentalView! It is very helpful to have your perspective as a healthcare professional. We are thrilled to welcome you to the RareGuru community and hope you will reach out to us with any suggestions on how to improve the app for our patients and caregivers. Stay well!

An amazing resource

Finally an app that is extremely easy to use and allows you to choose between caregiver or patient. Love the community aspect of Rare Guru!
RubyltdRubyltd

Response from developer

Thank you for your feedback Rubyltd! We're glad you find it easy to use our app and select your patient/caregiver/both user designation. Welcome to the RareGuru community and stay well.

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.
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binary hipsterbinary hipster

Response from developer

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.

Incredible Resource

Everything you need to know and connect is right here! It’s bringing me closer to this who are just like me while giving me so much information.
nguyenv17nguyenv17

Response from developer

nguyenv17, thank you for your feedback, that is great to hear! Welcome to RareGuru and stay well.

Awesome!

Very easy to use and very exciting to be able to talk to people with experiences similar to ours. This is a great tool for our family. We are so happy that we found RareGuru.
LeftysullyLeftysully

Response from developer

Leftysully we feel exactly the same way and are so happy to welcome you to RareGuru! Thank you for your feedback and for being a valued member of our community. Stay well.

Amazing Idea!

I think this is an amazing outlet to connect people who otherwise may not find the support network they need!
ashgermashgerm

Response from developer

Ashgerm we think you are amazing for recognizing this need and offering support to others in the RareGuru community! Welcome to RareGuru and please stay well.

Thankful

RareGuru is a comprehensive and easy to use resource and I’m thankful it was created. Whether I utilize it for myself or a loved one, this app will connect people and help bring clarity and hope to their situation.
Aravi55Aravi55

Response from developer

Thank you for downloading and joining the RareGuru community Aravi55! We look forward to helping millions of teens, caregivers and patients. Hope to hear from you soon and take care.

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.
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GardenGramsGardenGrams

Response from developer

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.

It is important

It is important that technology like this be harnessed to help inform and treat those with this illness.
Pastor John DPastor John D

Response from developer

Thank you Pastor John D! A wise man told us once during a crisis to always look for the helpers. We thought, why not create an app full of helpers? Thank you for downloading and reviewing the app and welcome to RareGuru. We have a feeling you will help a whole lot of people here. Stay well.

Amazing App!!

As a rare disease teen patient it is so hard to connect with people though social media. RareGuru solved that problem for me. I was able to connect with other people which was so amazing for me as a teen patient. Love this app 10/10
cocogal29cocogal29

Response from developer

cocogal29 thank you for downloading the app and letting us know what you love about it. Hopefully we will stay a 10/10 for you but if you ever notice anything that we could be doing better, don't hesitate to let us know. Stay well and welcome to RareGuru!

Finally a place for caregivers too!

What an amazing app! Onboarding as a “caregiver” instead of as a “patient” means I can finally connect with other caregivers who are facing a similar journey. Great resource for my entire family! Awesome.
NYCguy2020NYCguy2020

Response from developer

NYCguy2020 we know that caregivers are often overlooked and underserved when caring for someone with a rare disease or chronic condition. We hope you will find great connections with other caregivers in RareGuru, welcome!

Love this app

Awesome app!
jordy10soccerjordy10soccer

Response from developer

Thank you jordy10soccer! Love you back 🥰

What a resource!!!

Such a great app to connect with others in the rare disease community. Finally a place to learn and share resources, experience, treatments, and our lives with others that share in our rare disease diagnosis. Amazing. So grateful to have this available.
HPP WarriorHPP Warrior

Response from developer

Welcome to RareGuru HPP Warrior! We're thrilled you found us on day 1 and thankful that you will be able to help others facing a similar health journey in the future as our community grows. Ourr zebras have the best ideas on how to better serve the rare disease community so please let us know if you come across anything in our app that could be better, or if you have a great idea for a new feature! The best is yet to come. XO from your RG family, and stay well!

Incredible App for the Modern World

RareGuru is great. It’s an awesome way to connect with patients and caregivers of rare diseases that may know more about a rare disease than a Google search rabbit hole can provide. Thankful to have this app in our community!
BenThereB4BenThereB4

Response from developer

BenThereB4 please step away from the Google rabbit hole! All of the 7K diseases and 22K symptoms in our database are regularly updated from information generously provided by the United States Genetic and Rare Diseases Information Center (GARD). That means you can be confident we have the latest information on every rare, genetic and chronic condition. However, as fellow members of the rare disease community, we recognize no information source on rare diseases is without holes. Please let us know if you see something we should add to our database, whether it be info on an existing diagnosis or a disease that is not yet in our database. Also, we are always open to ideas on how we can improve the user experience within the app, and explore new features for future updates! Stay well and welcome to RareGuru.

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