Feeling isolated upon receiving a rare disease diagnosis, Claire Barrow set about creating a way of connecting people with rare conditions from all over the world. Still only 15 years old, and CEO of RareGuru, Claire has a strong passion for philanthropy. Having made a big impact on the rare disease community at such a young age, RARE Revolution is excited to see what she goes on to do next!

RARE entrepreneur series: meeting the beating hearts behind the RARE brands

RareGuru is an app that connects patients, caregivers and teens living with a rare disease. There are currently over 4,000 users of the app. Users can match with whomever they like, track symptoms, message other users and do a global search based on a diagnosis to see if there are any others going through a similar journey. Users can also choose to keep their profiles “private” if they would like as not everyone likes to disclose their diagnosis or symptoms.

1.

What was the driving force in starting your own business in the rare disease space? Was there an unmet need you were responding to?

During our diagnosis process my mom and I felt isolated and confused: it was new to us, and that process was overwhelming. I could confide in my mom but we were going through an entirely different diagnosis process based on the aspect of our ages since I was 12 at the time. It was hard to find other patients who had hypophosphatasia (HPP) to talk to. We wanted to create a place where patients were able to easily find other people to talk to about their diagnosis and other aspects about the rare disease community. The driving force was wanting to make sure that other people going through the diagnosis process can find safe and reliable resources and people to talk to throughout their journey.

2.

How does your business benefit the rare disease community?

RareGuru is an app that connects patients, caregivers, and teens based on location, disease and symptoms. It is very hard to find other people that share the same diagnosis especially at the start of a rare disease journey. RareGuru makes it easy to get information from some of the most reliable sources: patients themselves. It helps patients steer away from search engines and social media that tend to be negative or confusing. Being able to connect with other patients and ask them questions not only gives you knowledge into the disease itself but also protects your mental health from the anxiety that would come from a google search. Along with new patients RareGuru also benefits patients who aren’t newly diagnosed and even caregivers. It is a way for the community to easily connect and share advice. The rare disease community is vastly larger than people think and by connecting them we can help spread awareness and make people feel like they have a supportive community around them during some of the most challenging times of their life.

3.

What advice, if any, did you get when setting up your business? Has there been anyone in particular who has been pivotal in supporting your business?

I have had the privilege to work alongside my family and so many amazing people while developing RareGuru. My parents played a huge role in helping me bring the idea to life. They took it upon themselves to make our idea a reality. It was an amazing experience not only working with my family but having them support me at such a young age really was something special.

The Tampa Bay Wave (tech incubator) played a pivotal role in guiding me through the very new experience of working in the tech industry and running an everyday business. I was selected for their Rising Women of Florida accelerator program. Being surrounded by a community of women that are sharing the same experience was so inspirational. Learning from other entrepreneurs about what to do and what not to do made this journey so much easier. It made the whole process not as intimidating as these women face some of the same daily business struggles that I did. 

4.

How do you manage the demands of running a business with your own health needs, those of someone you care for, or those of your employees?

My mom and I right now have routine checkups but we learned to develop a pretty big team. They understand that if one of us does have a setback with HPP then they can step in and carry on with the daily tasks of the business if needed.

5.

What advice do you have for someone starting their own business?

My advice is just simply follow what you are passionate about. I know a lot of people say it but it’s so true. If you aren’t passionate about your business and what you are providing, building your business is going to be painful and non-rewarding. For me when building RareGuru I was so passionate about all the aspects that went into it. The rare disease aspect obviously had a big part in my life but also the philanthropy part has been something I have loved and still love doing. The social media aspect and communication has been something I have been interested in for a long time and I now get to experiment with using RareGuru. Being passionate about what you are doing just makes every win, big or small, so exciting and worth everything you have worked towards.

6.

What are the most rewarding aspects of establishing and running your own business?

The most rewarding part of RareGuru is definitely being able to see everyone that has been positively impacted by the app. Being able to hear about connections people have made and hearing how it helped them makes all the work worth it. I love sharing our story and getting feedback from people who have had a similar journey with a rare disease. It makes us remember that so many others are going through what we went through and provides the same amount of comfort to them as well. Knowing that so many people are going through the same journey as you makes you feel less alone and being able to provide that knowledge to someone else is so rewarding.

7.

What would you consider to be the greatest achievements of your business thus far?

My biggest achievement was being the youngest woman accepted into the Wave program. Being accepted into the program was a tremendous honour on its own but the honour of being the youngest woman accepted was such a big achievement. I absolutely love having a group of women in tech surround me because it has taught me so much, especially as a newcomer in the tech industry. Also, all of the press recognition we got at the start of our app was overwhelming. Having that right at the start of our business really gave us the boost of confidence that we needed and steered us in the right direction.

8.

What advice would you give someone considering working in the rare disease space?

I would say focus on one aspect you want to help. The dream is for the community as a whole to be helped but what most don’t realise is that within the rare disease community there are thousands of other smaller communities that make it up. If you are considering working in the rare disease space, just simply helping one of those communities can make such a difference. Whether it’s the disease you were diagnosed with or an area that needs fixing, helping in a narrowly defined area can do so much more than trying to help the whole giant community.

9.

What are your hopes for the future of your business?

I truly hope that we can reach more people and connect more communities. We are also looking to add more features to the app like a personalised news feed based on your diagnosis as well as allowing people to search and match through a clinical trial database.

10.

If you hadn’t founded RareGuru what was Plan B?  What did your 10-year-old self want to be?

Although I have the privilege to be doing this during my high school years I am still figuring out what career path I want to take. I’ve always known I wanted to do something that connects with people and something in philanthropy. Helping people has always been something I have been passionate about and being able to connect with others has been something I want to continue to do. If my family had not founded RareGuru there is no doubt in my mind that we would be doing something else to benefit the rare disease community.