Eight Unique Ways to get Involved in the Diabetes Community

As someone living with diabetes, there are so many different ways to be a part of the community! Some are more obvious, but some I only discovered through random encounters or newsletters years after having diabetes. With that being said, today I’m excited to share some fun, unique ways to get involved in the diabetes world. These diabetes activities have helped me grow my professional network, make friends who know what it’s like to live with chronic illness, and helped to give me a sense of purpose and opportunity to give back. If you’re looking for ways to get involved and meet new people, check out some of the suggestions below!  

1. Research 

Being part of diabetes research can be super fascinating—it allows you to see what new advances are being made before the general public know. One way to get involved with research is to volunteer for a clinical trial where you’re testing a new medication, treatment regime, or some other element of diabetes management. These are often advertised at conferences, doctor’s offices, or in diabetes newsletters. I’ve done a few of these and they’re interesting and usually well compensated (a potential side hustle!) but can be time-intensive and mess with your daily diabetes management if the study is manipulating part of your routine. I did one looking at a new insulin pump and another looking at CGM use with exercise and enjoyed both, but I was a student and therefore able to make all the appointments they required. Since I work full time now, I haven’t found any clinical trials that would fit with my work schedule.

If a clinical trial isn’t for you, being a patient partner is another great option. Patient partners are people living with or impacted by diabetes who meet with study investigators to provide their input on research questions and study methods to make sure the research being done will actually be impactful to the community. This usually involves a few meetings, reviewing documents, and completing surveys and interviews. They’re typically paid ($25 an hour is the going rate) and there are sometimes bonus conferences to hear about research and/or formal training opportunities (all paid). I’ve been a patient partner for over five years now and love how it’s a lower-effort way of being involved in meaningful research. If you’re in Canada, I highly recommend you check out Diabetes Action Canada, I’ve done all of my work through them and they’re such a great group. They recently held a webinar answering all kinds of questions about getting started and it was very informative, give it a watch if you’re interested in patient partner work!

Through my work as a patient partner, I helped to research and write Diabetes Canada’s official language statement on diabetes! Read the article here.

2. Advocacy 

In addition to research studies, advocacy is another way to get involved in the diabetes community. As a person with diabetes, advocacy often involves partnering with an organization that is working to increase public or government awareness to drive funding for diabetes-related issues. Some of the big diabetes advocacy organizations in Canada are Diabetes Canada and JDRF. I’ve done this type of advocacy work before and have been asked to share my story on a national news program and also at local government offices. It feels really impactful, but in my experience it can also feel like your diagnosis story and life with diabetes is paraded around a bit (you often only hear from these organizations with last-minute requests and then won’t hear from them for months), so I decided it wasn’t the ideal activity for me for an ongoing basis. 

3. Social media 

Over the past few years, the diabetes community on social media has exploded. It’s a wonderful way to find community and build friendships with others in ways that were previously really hard to do. If you feel compelled to share, you can also create your own content and share your day-to-day experiences with others. I have this blog and the corresponding Instagram (launching soon!) and TikTok pages and love it as a creative outlet and way to build my community. However, it did take me a while to feel like I had a place in the online diabetes community because (in the beginning) it seemed like a lot of “perfect” diabetics showing only perfect blood sugars and daily routines and it made me feel bad that I wasn’t in the same position. However, I think there’s a lot more authenticity these days and less “perfect” being shown. If you do feel bad watching someone’s posts, I encourage you to keep looking as there are bound to be diabetes content creators that you’ll resonate with. 

4. Camps/events 

This is a really fun way to get involved in the community! There are so many diabetes events and camps (for both adults and children) that help build friendships and also provide a bit of a break from the diabetes grind. I went to Camp Huronda, a diabetes camp for children that is now part of Diabetes Canada’s D Camps program, for six years as a child and LOVED it (see some throwbacks below). It was one of the only times I didn’t feel different, and I’m still in touch with many of the friends I made there. 

For adults, ConnectedInMotion is a great organization that puts on adult “camps” (called Slipstreams) across Canada and the USA for a weekend where you get a similar experience to going to camp as a child. They feature fun activities, events to connect with others, and educational talks so you can learn about diabetes while there. There are also really cool hiking and biking activities I’ve seen over the years (it’s on my diabetes bucket list to do one!), which you can find by Googling “diabetes bike/hike/camping trip in X province/state”. Such a fun, out-of-the-box way to be surrounded by people who truly get it, and I would totally recommend trying one of these kinds of events if you haven’t before. 

5. Fundraising 

If the last idea was of interest to you, consider combining physical activity with fundraising and sign up for a Walk/Bike to Cure Diabetes. JDRF does these internationally where you register yourself and then raise funds in advance of the event. I did a local Walk to Cure Diabetes with JDRF when I was a teenager and raised about $1000. It was a fun event with prizes and I met some new friends. I’ve also seen some really cool international events (think “Bike to Cure Diabetes in Paris, France”) and I’d like to do one of those at some point, too. If physical activity isn’t your thing, you can also fundraise by hosting a party or asking your company to sponsor a diabetes event (like this amazing Pump Couture Fashion Show!!) or gala. 

6. Educational talks 

If speaking and sharing your diabetes knowledge appeals to you, volunteering your time to give educational talks at schools can be a really unique way to give back. There are grass-roots community organizations that often arrange these, or you can reach out to bigger organizations to see if they know of anyone in your area who organizes talks. I volunteered to give educational talks about diabetes as a child/teenager in my local area, accompanied by a nurse who volunteered her time, with the goal of educating teachers and students about diabetes and specific low symptoms to look out for. This is a great way to do some myth-busting, and in my experience the people listening to the talks always have great questions. I liked this opportunity when I was younger because it made me feel like my diabetes experience was being used to help pave the way for children who would come after me to feel a bit more normal. 

7. Mentorship 

Possibly my favorite way to get involved in the diabetes community has been through mentorship, both as a mentee and as a mentor. Mentorship can be arranged through local hospitals, larger organizations, or even on an ad-hoc basis if you connect with someone and want to help each other. There are programs for all ages: check out this one geared towards students, and this one for adults. As a mentor, I’ve had the opportunity to be paired with newly diagnosed and/or younger people with diabetes to help them navigate tricky situations like handling lows at school, managing diabetes and drinking, and feeling overwhelmed with diabetes amongst other commitments. As a mentee, I’ve been connected with people who have lived with diabetes for 30+ years and they have provided advice on things like advocating for a different healthcare team, thinking about fertility, and navigating the Registered Disability Savings Plan here in Canada. There’s a lot of info online about all of these things, but sometimes having a friend you can call who can walk you through it makes a world of difference. I recommend getting involved with mentorship in some capacity to all people living with diabetes. 

8. Patient consulting in pharmaceuticals  

This last idea is something I haven’t tried myself but have heard about, and even got to see in action when I was involved in generating new business while working at a pharmaceutical marketing agency. Essentially, pharmaceutical companies and other companies involved in the space (such as marketing agencies, consulting companies, etc.) sometimes bring in patients to consult on products, ideas, events, and even new business pitches. In exchange, you can make some pretty great money doing this (I believe around $5k is the starting rate for a minor consulting engagement, often going up into the high 5-figure range for larger consulting opps). However, these positions can be hard to find, and rare disease patients are more sought-after versus a more “common” disease like type 1 diabetes. That being said, I know people who have done small consulting engagements for diabetes pharmaceutical companies and they were able to get these roles by networking with industry representatives at conferences and then nurturing those connections. Definitely something to think about if the opportunity comes up!