Case Study
Expanding her sphere of influence in an authentic and aligned way was the key to business growth for rare disease patient advocate Patti.
“I finally have the messaging that makes sense.”
Patti DeMuri, Rare disease patient advocate and educator
Patti is a rare disease patient and patient advocate, now also a patient educator. Her business helps rare disease patients learn how to understand the medical system and better advocate for themselves so they can get the right care in a system that’s not optimized for rare and complex patients.
Despite the first-hand experience of being a rare disease patient, Patti still struggled to communicate what she offered in a way that really connected with people and helped them understand she could help.
“I've been in the rare disease world for over 15 years now. There are a lot of Facebook groups that are disease-specific, and there are some that cover a couple of diseases. I've been known as one of the older people to be in those groups and have given a lot of insights and information to people over the years. But it was hard to figure out how to reach those people.”
“When I met Paul and Melissa, I had created a membership and a lot of resources. But I had a really hard time reaching people and getting them to understand.”
“That whole messaging piece was so frustrating for me.”
“Because I'm really good at creating the classes and providing an experience for them, but I couldn't explain to them what it was, why it was important for them and the possibility that things could change for them.”
“Through the Adaptive coaching, I have pivoted, and now I do more outreach within the Facebook groups. I now have three Facebook groups where I know the people who run them. They're often very protective of their people; as you can imagine, they don't want people in there selling things. These people know me, we have a relationship, and I do free trainings. But then I also get to make offers in there.”
“Between the Facebook groups, there’re about 70,000 people. So I've switched from trying to reach them through Facebook ads to really forming those relationships and serving those communities and then being able to find people within those groups that what I teach resonates with them.”
What elements of Adaptive have made the biggest impact on your business?
“The Adaptive training Influenced has made a huge difference because it's given me the ability to really understand where people are at.”
“I can go back into that space that was 15 years ago for me and find the language that they're using, really start to connect with them on that emotional basis, and then kind of meet them where they are, and then be able to show them that things can change.”
“Because of Influenced, when I am in those groups, I'm much more focused on what people think, feel, say and do. Then I use the concepts I've learned to write posts and even identify what I need to write on my sales pages.”
“For example, right now, I'm working on a new lead magnet on how to get your doctor to listen. So in my Facebook group, I just put up a poll and said, Hey, are you having a hard time getting your doctors to listen to you? Why do you think this is happening? And how do you feel when that happens? So I'm actually getting them to share with me what that is, and then I will be able to use that to connect with them when I do my lead magnet.”
“I definitely like connecting with people with this organic approach better.”
“I have found that even just taking a topic and being able to find Facebook posts related to it and then putting my spin on it before sharing has been very successful for one. Recently, I did a course on medical trauma. And so there are a lot of posts out there right now on trauma and over-explaining is a trauma response. So I wrote a little extra to that when I posted it and said, Hey, this is what happens to me when I'm in medical appointments. I know I over-explain, you do the same thing. It was hugely popular; l was really able to go back and connect with where they're at.”
“I don't think I would have been as conscious of that connection to where they are if it hadn't been for Influenced.”
“I definitely like connecting with people with this organic approach better.”
“I have found that even just taking a topic and being able to find Facebook posts related to it and then putting my spin on it before sharing has been very successful for one. Recently, I did a course on medical trauma. And so there are a lot of posts out there right now on trauma and over-explaining is a trauma response. So I wrote a little extra to that when I posted it and said, Hey, this is what happens to me when I'm in medical appointments. I know I over-explain, you do the same thing. It was hugely popular; l was really able to go back and connect with where they're at.”
“I don't think I would have been as conscious of that connection to where they are if it hadn't been for Influenced.”
How has that approach changed your business?
“I'm still in the beginning stages in terms of finances, but this sphere of influence has grown so much; every time I do something, more people reach out. It gives me the ability to influence more people and to be able to serve more people in a really genuine and aligned way. It’s also led to other bigger business opportunities.”
“It has hugely changed my business, my approach and just my whole outlook on it.”
“It's interesting because the majority of the people that have joined me recently were people that didn't know about me until they saw something in one of those groups. They have joined my courses, membership, or coaching and are aligned with what I'm doing. So the messaging seems to be very consistent and very aligned with what my offers are.”
“I finally have the messaging that makes sense.”
“I always wanted to teach, but you can't teach people you can’t reach. Finally, I have the tool to do that, to take myself out of teaching mode and just connect with them. And say, "Hey, here's something that might be helpful.”
“I've gotten much more clarity about where I want to spend my time and energy.
Where do you see your business and support of rare disease patients in the future?
“I have now started to work with a patient advocacy group to create a self-advocacy toolkit through a project that's being supported through grants that they have received for us to be able to do this for a specific patient population.”
“And I'm also talking to another company that does some genetics-type work trying to connect undiagnosed patients with pharmaceutical companies that are trying to do rare disease testing of possible pharmaceuticals because it's really hard to get enough patients to be able to test the medications.”
“Eventually, I would love to take what I do to insurance companies and say, Hey, if your patients know what to do when they go into their appointments, you're going to get much better value.”
Where do you see your business and support of rare disease patients in the future?
“I have now started to work with a patient advocacy group to create a self-advocacy toolkit through a project that's being supported through grants that they have received for us to be able to do this for a specific patient population.”
“And I'm also talking to another company that does some genetics-type work trying to connect undiagnosed patients with pharmaceutical companies that are trying to do rare disease testing of possible pharmaceuticals because it's really hard to get enough patients to be able to test the medications.”
“Eventually, I would love to take what I do to insurance companies and say, Hey, if your patients know what to do when they go into their appointments, you're going to get much better value.”
What’s your advice for other business owners considering Adaptive?
“Your business is totally dependent on your message and connecting with the right people. And that is what Adaptive does. It gives you the ability to refine your messaging, and really learn how to connect with people where they're at, and be able to show them what transformation you can offer to them.”
“That messaging piece is what’s missing for a lot of business owners; that's what we all dislike the most, and I think we find the hardest. It's easy to create in our sphere of genius, but much harder to go back to that beginner's mind and where people are at is really hard. So giving us a concrete, easy tool to use with Influenced is amazing.”
“And then it’s the whole environment of Adaptive.
“The combination of information and implementation support. I've learned strategies and skills, but I'm also given that support to keep going. And there are people I know now that we go to the same office hours and support each other. And so that really helps, too.”
“All of the pieces together have given me the confidence now to say, Hey, this is who I am; I love connecting with people. And that's my forte, so I can use that to be able to grow my business and to be able to do more. So it's really the whole package. It's not just one thing.”
“Adaptive is well worth it. Definitely worth the money. Each little piece is worth the money, so having them all together is just amazing.”
Expanding her sphere of influence in an authentic and aligned way was the key to business growth for rare disease patient advocate Patti.
Despite 15 years as a rare disease patient and patient advocate, Patti still struggled to communicate what she offered in a way that really connected with people and helped them understand she could help. She knew messaging was the missing piece and was getting increasingly frustrated at not hitting the mark.
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Undertook and implemented the strategies from Influenced training
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Now a respected authority figure in several specialist rare disease groups
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Using her understanding of her audience to create relatable copy
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Feels a more organic and connective approach is very aligned with her business
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Working with a patient advocacy group to create a self-advocacy toolkit
