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The Worst Disease You Never Heard Of.

Entered in Long Form Video


This idea was born out of shock, empathy and a need to elevate the voices of those living with Epidermolysis Bullosa (EB) and their caregivers. It is a rare, hereditary disease. It is estimated to affect 1 in 50,000 births. This is a painful, debilitating skin disease. Skin literally has trouble staying on the body. Most babies who have EB are born without skin. A doctor I spoke with describes EB as the equivalent of living with third degree burns all over the body, every single day.

Infection rates are high and life expectancy is low for this patient population. The average life expectancy is less than 30 years. There is limited funding and limited research efforts for the people living with EB.

This video aimed to educate viewers about the day-to-day physical, emotional and social challenges facing this particular rare disease community. It serves as a resource for those who want to learn more about EB and better understand the limitations the disease has on patients and their families.

In addition, this piece was created to promote compassion and advocacy for innovative treatment approaches. The client; a clinical-stage biopharmaceutical company used the video as an investment relations tool in an effort to garner more funding for an innovative gene therapy treatment.






I was told about this particular disease through a former client who was working at a small biotech company. The company is a start-up and it is operated by scientists, pharmaceutical executives and doctors. ALL of whom are incredibly talented and intelligent but they do not know how to tell a simple story that resonates with regular people. As he was telling me about Recessive Dystrophic Epidermolysis Bullosa and the company's mission to bring a specific gene therapy to patients as a treatment option, I knew this was a story that had to be told; these patients needed to be heard and seen. So, I asked him if he would hire me to produce a video where I had complete autonomy and editorial control. He said yes and I ran with it!

Through good old fashion networking, I called doctors, nurses and a few nonprofit leaders that I knew who steered me in the right direction. I emailed moms and dads who had a few Facebook posts about their caregiving experience with RDEB. It was just connecting the dots, cold calling, and emails that led me to find Noelle and Geovanna. 

I explained to each family that I wanted to better understand the true disease burden. I assured them that the imagery we captured would respect their body and skin without exploiting their disfigurement. I needed to detail the authenticity of a day in their life with bandage changes and bath routines. Incorporating this particular element was imperative to the overall story. I coordinated the travel arrangements for myself and my photojournalist; we flew to California and Massachusetts for filming and interviews.

Pre-production included lengthy discussions with my photojournalist about the severity of our subject's skin and how it looked.  I operate as a two-person crew; myself and the photojournalist. Our background and roots in television newsrooms allows us to do more with less. Between the two of us we set up 2 cameras, lights and a boom microphone. I wrote the script, tracked the voice-over, and sent him a detailed script with timecodes for editing. 

The biggest challenge was combining the 2 stories of the families and making sure each family received equal time. Geovanna was not able to convey good soundbites to us so I wrote around that and directed my editor to use photos and close up shots of her for inclusivity. It was also difficult to keep composure during the Q&A's. We did end up crying a few times during the interviews but I believe expressing authenticity and vulnerability strengthened our connection to these families and allowed them to share more with us about their trials and triumphs with this disease and it enabled us to create a story with an impactful tone.


The objective for this project was to provide information about the disease and showcase how people are impacted by EB. It was also important to show the physical pain and daily frustrations this disease imparts onto patients and their caregivers with clarity, brevity and impact. The communication goal was to inform people about EB.

As the producer of this piece, iI wanted to highlight how this genetic disease does not discriminate based on language, social classes and/or race. To date the video has been shared in two languages throughout two continents; North America and South America. Through writing, visuals and soundbites the impact of this particular story educates the viewer about EB and established the client as a credible resource to key thought leaders in the EB health landscape. The video has also helped the client connect with more patients living with EB and their caregivers. We know this based on verbal feedback during in person events and conferences. Within 30 days the video was watched more than 200 times on the client's website. 


Video for The Worst Disease You Never Heard Of.

Entrant Company / Organization Name

Stephanie Simão, Skinny Sister Productions


Entry Credits