With personal experience of the lengthy diagnostic odyssey that so often comes with rare and genetic diseases, Eesha Sharma created Lamar Health to unite patients, doctors and researchers in their learning. She recognises the importance of the patient experience which it is why it is firmly at the heart of all they do.

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

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?

My older sibling has an undiagnosed genetic condition. She was on several unnecessary medications growing up with severe side effects.

It took many years of slow trial and error to figure out which medications were not necessary. What’s difficult about rare disease is that patients don’t have great ways of learning about their condition. Patients and doctors also only have fragmented ways of learning from each other.

This is what we are aiming to change. 

2.

How does your business benefit the rare disease community?

Our service aims to help both patients and doctors get the most up-to-date information on genetic disease. Through our services, we aim to create a tight learning loop between doctors, patients and life science researchers.

For patients: We provide easy-to-understand personalised reports on their condition so they are empowered to know what to expect and what to ask for during their care journey. This includes what symptoms to expect, what to avoid, care management options and side effects of commonly prescribed medications. Patients can choose to receive notifications on new research or clinical trials related to them.

Part of how we do research is through our patient app that allows patients to track symptoms, medications and medical diets and we share this anonymously through disease-specific insight reports. We work with academic partners to use this data to help improve the medical literature. 

For doctors: We help doctors efficiently research and share disease-specific templates for clinical notes with their peers. We’ve designed our service to be a webapp that does not collect patient-specific information or require two-factor authentication sign-in so they do not need to worry about painful EHR integrations or modifying their existing workflows.

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?

We got a lot of advice from different stakeholders across patient groups, doctors, research groups and other founders more experienced in the healthcare space. 

What has been most pivotal has been talking to a lot of doctors and patients to really understand their needs. These conversations guide 100% of what we do. 

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?

Maybe because of my sister’s condition, I don’t take my health for granted. I work out and eat healthy. For my sister we try to keep a very regular and healthy diet and get her to take walks with us. It can be a struggle to get her started but once we are on the way, she enjoys them. Mental health is even more important to keep an eye on. For that our family and friend support system is extremely strong. It also helps to talk to my sister every day, especially when I hit a difficult patch and need a second to remember why I got into this. 

5.

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

Have a strong why. Starting a business is one of the hardest things a person can do. It is inherently risky and is relatively thankless in the early days and maybe forever. The challenge of persisting is completely about mindset and without a great why (usually a personal pain point or deep conviction because you’ve seen something have traction), it’s very difficult to operate with total conviction that this is what needs to exist in the world to make it better. 

6.

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

Working with other smart people on a difficult problem and seeing the look of surprise and excitement when people use it. It might be a business I started, but I know I have very little to do with it. It’s mostly built by the awesome team at Lamar Health and designed for patients and doctors that are often on a lonely journey. Seeing our team learning and growing in their skills and building cool things that help make the world better is so rewarding. 

7.

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

We helped a patient understand enough about their condition to ask for a treatment that helped them get better. This was our very first patient report and it was such a rewarding feeling to know that we could help them be their best advocate. This is exactly what we were hoping for.

Another awesome achievement is getting a community of patients, doctors and genetic counsellors to help build it. We get so excited to hear from the people we aim to help. Feel free to reach out at founders@lamarhealth.com. It takes a village to really change things and we would love to hear from you!

8.

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

Often when thinking through our services, a memory comes to me of a doctor telling my mom: “You are her [my sister’s] most capable care provider because we only know so much”. I was pretty young at the time and remember being really confused and startled. In my head I thought “isn’t it this person’s job to know?”

This of course makes sense now that I have more of an appreciation of the fragmented ways knowledge is transferred in rare disease and the workload and time constraints of care providers.

But what this means is patients have to become their own hero. It’s important and, likely essential, in this space to design and develop with the patient experience at the heart.

9.

What are your hopes for the future of your business?

I hope our platform will create a tight learning loop between patients, doctors and those doing research so that we get improvements in diagnostics, treatments and a care journey that is less scary because there’s less unknowns. I hope the version of the future our business helps make possible is one where families are on a less lonely journey when navigating rare disease.

I hope whenever anyone is seeking clinical, up-to-date curated information on rare disease they come to us. Be that a patient, provider or researcher. 

10.

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

Founding a company to work on rare disease therapeutics using antisense oligonucleotides to correct how much of certain proteins are made in the cell (based off of some of the work I did during my time at Stanford). It’s not a Plan B though, it’s what I’ll do next. I think what we are creating is an essential first step to execute that well. 

My 10-year-old self-wanted to be running a hotel because I thought the costs involved in running a business like that were nothing. A lot has changed since then, namely falling in love with science. I suppose I could still Airbnb my room!