Helping patients share their story.

Rare diseases can be difficult for patients and their families, when there is little information, support, or research available. In 2004, Bonnie Schneider’s son was diagnosed with IgA Nephropathy (IgAN), a rare autoimmune disease that attacks the kidneys. Schneider quit her job and founded the IgA Nephropathy Foundation, a registered 501(c) nonprofit dedicated to connecting IgAN patients and finding a cure.

Gisela Delgado, current Brand Creative Director at the IgA Nephropathy Foundation, first heard about the non-proft shortly before she received a kidney transplant. “I was diagnosed with IgAN at the age of 14, and at the time, there was no one to talk to,” explains Delgado. “It was really hard to find out what was going on. After 25 years of going at it alone, I was so excited to learn about the IgA Nephropathy Foundation. But I also couldn’t believe that I hadn’t heard about it sooner.”

IgAN SPARK 2022 Nashville event

During the day, Delgado works as a leader at a luxury fitness and wellness company that operates a chain of high-end gyms and spas. With her experience, she knew she could help the IgA Nephropathy Foundation find new ways to build a brand, reach IgAN patients and caregivers, and raise funds to find a cure, so she began volunteering with the foundation as the brand creative director.

“I’ve found that being vulnerable and telling a compelling story is especially important when raising awareness for a disease like IgAN,” says Delgado. “As a nonprofit, a lot of people are donating their time and putting in a few hours a week while working full-time jobs. Our creative work needs to be as effortless as possible. That’s why I use Adobe Express. It helps me create compelling, shareable content that raises the profile of IgAN.”

Growing social media reach

After joining the IgA Nephropathy Foundation, Delgado worked with other leaders — including Schneider’s son Eddie, now a marketing professional himself — to streamline the website and turn it into a hub for patients, caregivers, and doctors.

“I want the foundation to become known as a trusted resource for IgAN, where people can ask questions, get support, and learn about clinical trials,” says Delgado. “It’s important to have a consistent, clear branding that we use across channels — from the website to social media to in-person events — so that people come away remembering our name and what we do.”

IgAN SPARK 2022 Nashville event

Social media is one of the top ways that the foundation reaches broader audiences by making it easy for people to share content online. Adobe Express includes many templates that Delgado can use for inspiration, which helps her experiment with different types of posts and find new ways to increase social media reach. She can then modify those templates to create a unique look and feel for the foundation’s social media pages. Working with templates allows Delgado to quickly create social media posts without needing to start from scratch. Different templates can be used for different types of posts, from patient profiles to event posts to inspirational messages.

In the past year, Delgado created 257 social posts garnering 21,158 clicks, likes, comments, and shares. The foundation gained 1,643 new followers, which helped encourage 678 new members to join the organization: an 883% increase in twelve months.

“I’ve still got my day job, so I’m often working on social media on lunch breaks,” says Delgado. “I create about 90% of social media posts on Adobe Express. It helps me work quickly and really focus on messaging and readers’ experiences. I can even hop on my phone to create something on mobile or make updates when I have a spare minute.”

IgAN Ambassadors highlighted in social content created using Adobe Express

Sharing stories of IgAN

People believe what they see, especially patients, which is why it's important to share stories. Delgado uses Adobe Express to create bite size social content to put a face to IgAN and share those patient stories. Adobe Express is also used to help patients when they need to start their search for kidney donors. Patients can easily remix the template to tell their own story, even working on a smartphone to create something that they are proud to share across social media. The Foundation is focused on care and treatment for IgAN patients and one form of treatment is ultimately needing a transplant.

“I’ve helped three people so far create microsites with Adobe Express, and it’s already helped two of them find donors,” says Delgado. “I love that we can see how the pages are performing, so we know that they’ve gotten up to 12,000 views. I think Adobe Express is a great way for patients to share their story in ways that are easy to experience, even on channels other than social media.”

Searching for a cure

The IgA Nephropathy Foundation has big plans for how it will continue to raise awareness of IgAN. The new Ambassador Program trains volunteer experts to lead events and raise awareness on a local, grassroots level. The U.S. Congress, Washington, D.C., New Jersey, and Wisconsin have recognized May 14 as IgA Nephropathy Awareness Day, and the foundation hopes to spread this reach across more states in years to come.

“Not everyone can say that their designs help build communities and save lives, but in this case, it’s true,” says Delgado. “Adobe Express is fast and easy to use, so I can spend more time spreading awareness of IgAN and bringing us closer to finding a cure.”

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