Kristine Hoestermann and Theresa Thomas’ partnership was formed from a shared passion and drive to raise awareness for rare diseases. RARE. is not just a brand but a movement. They speak to RARE Revolution about what led them to creating RARE. and about their mission to make the invisible – visible
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CEO Series: meeting the beating hearts behind the RARE brands

1.

What made you want to move into the wide world of rare disease, and then specifically RARE and what did that journey look like?

Neither of us had a choice when it came to the world of rare disease, although we wouldn’t change it.

Kristine: At the age of 27 I was an avid runner and noticed a pain in my knee. What I didn’t realise then was that pain was the beginning of my rare disease journey. I created RARE. initially as a way to express myself and the change that was happening in my life. After some time I realised that RARE. was a tool that not only could help me but could help others as well. The safe place I created was needed by more people than just myself. I began creating clothes and household items that helped raise awareness for rare diseases. Which eventually led me to connecting with Theresa.

Theresa: Two and a half years ago my son Owen was born weighing in at almost 12 pounds. I immediately knew that something was different about my son. He was very large and his tongue protruded from his mouth. Two weeks later we got his official rare disease diagnosis of Beckwith-Wiedemann Syndrome (BWS). A year after my son was born my husband was pushing me to start a blog. He knew I was struggling with our son’s rare disease and he felt that writing would help me express myself. Little did I know six months later I would connect with Kristine through Instagram, and ultimately become her business partner and COO of RARE.

2.

What do you anticipate will be the biggest challenges and opportunities for your organisation in the next two years?

We believe our biggest challenges are exposure and reach. Although we have been connecting with so many amazing families there are still so many people suffering in silence with no community or voice. We want to reach them as quickly as we can so they know that they are not alone.
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Some of our biggest opportunities have been, and continue to be, working with philanthropists in the rare disease network. We are working with authors such as Deborah G. Edwards, David Fajgenbaum, and Sarah Ramey. We are currently working on a few projects with non-profit organisations as well as other rare disease fighters, in addition to working on next year’s Rare disease day event.

3.

What is your proudest moment in your career thus far?

One thing we value the most is the ability we have created to connect with people across the world. To date RARE. is in 31 states and six countries. We also worked incredibly hard on our shop with a purpose initiative. When you check out on RARE. you now have the ability to choose between several non-profits where 15% of your purchase total will be donated to.

4.

What and who are your personal and professional inspirations and why?

Kristine: Taylor Swift has always inspired me because she built her brand from the bottom up using her own story to touch the masses. She is always authentic and real and connects with her fans despite the criticism and negativity she receives. She continues to stay true to who she is. She built her brand through personal connections with her fans and continues to cultivate kindness and fight for equality which correlates to the brand we are building—one that is authentic and made from genuine connections and stories.

Theresa: My inspiration has always been my older sister Michelle. She was born with one arm but has never let it hold her back. She deals with everything head on and is now a paediatric nurse at one of the top Children’s Hospital. She has faced adversity her whole life but you would never know it. She has always been a source of inspiration and strength for me.

5.

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

6.

Do you think the government does enough for the rare disease community at a local and central level, and what gaps do you see currently or emerging?

We feel there are gaps from diagnosis all the way through to workplace accommodations. Until we put the patient at the centre of the solutions these gaps will continue to grow.

7.

What would you say are some of the biggest motivators for you? 

Kristine: The biggest motivators for me are the kind messages and affirmations that RARE. receives. We are constantly reminded that the work we are doing is reaching the people who need it most.
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Theresa: My biggest motivator is my son Owen. Watching him grow and go through life with a rare disease, one that most people have never heard of, continues to motivate me to create change and awareness for him and other BWS children.

8.

​What are the toughest parts of being a CEO, and conversely what are the most rewarding?

9.

What would be your one wish for RARE for the year ahead?

Our wish is that we are able to continue our journey of cultivating change, impacting lives, and creating designs that people resonate with. 

10.

If you weren’t CEO of RARE, what was Plan B?  What did your 10-year-old self want to do as a job?

RARE. actually was our plan B.

Kristine: Prior to getting sick I was a clinical social worker.
Theresa: Prior to having Owen I was a registered cardiovascular invasive specialist.
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Our 10 year old selves both wanted to do jobs that made us happy and had a tremendous positive impact on others. We both were in fields that accomplished that, however our lives took a different turn and we are now able to continue to live out our 10 year old dream through RARE.