Comend

Comend strives to solve the fragmentation problem between family caregivers and researchers in rare diseases.

The hundreds of millions of families globally with a loved one afflicted by rare diseases are divided into over 7,000 rare conditions (with hundreds of new conditions discovered annually). These families often struggle to find others who share their diagnosis, especially when they fall under the half of conditions that lack a formal patient or advocacy group. The significance of low peer connection is felt in the severe social isolation that over 90% of family caregivers report, which compounds widespread mental health concerns and burnout. Ultimately, these effects trickle down to the quality of care provided to patients, resulting in an increased demand on medical systems.

The barriers to identifying and interacting with peers include the limited sizes of individual patient populations, particularly within ultra and nano-rare conditions. But even within diseases represented by established patient groups, barriers exist in the form of discomfort with existing communication tools including social media and the invisibility of shared non-diagnostic traits (e.g., location, cultural backgrounds, and socioeconomic status) which are especially felt by marginalized and minority groups. And yet, rare families at large are an incredibly diverse population that share challenges and goals ranging from those related to pediatric care and disability support to understanding genomics and driving research. Their expertise, currently held in silos, can complement or lift that of their peers and often does when successful connections are made. Based on our extensive primary and secondary research, improved access to holistic peer connections is one of the biggest needs when it comes to supporting for rare families.

At the same time, research in rare diseases also suffers from this fragmented patient population as well as the gap that exists between the families and researchers. Given that only 5% of such conditions have any FDA-approved treatment this is integral. Most clearly, the difficulty associated with scattered patient populations has to do with finding and accessing them. As a result, we see a major bottleneck in drug development at the stage of clinical trial recruitment: 86% of trials fail to reach and onboard enough patients, resulting in immense losses in capital and delays if not failures to therapeutic projects. More fundamentally, the deficiency of family involvement at earlier stages of research during protocol design and even basic research results in inefficiencies in time, capital, and effort, invested by academic and industry researchers. Families, on the other hand, desire trust and ownership. They are actively looking to apply their expertise and resources to support development but feel frustrated with the traditionally one-directional relationship with innovation.

Comend is an online space that brings the rare disease community together over curated resources, holistic peer connections, and connections to researchers.

Beginning with curated resources, we’ve built a virtual library in close collaboration with our Chief Rare Mom and good friend, Sierra Phillips. It’s comprised of over 3,000 (and constantly growing) disability resources ranging from educational materials to grants for patient foundations, all organized by location. Our roadmap moving forward is to enable the crowdsourcing of new resources and social features such as discussions and reviews to improve the helpfulness of existing entries. It is clear from Sierra’s firsthand experience and those of our users that this will drastically reduce the time spent discovering appropriate support, improving the efficiency of these programs and limit unnecessary, though currently extensive, travel for families - a direct impact on the population’s ecological footprint.

Moving forward, the critical role of the library in our solution is to form a flywheel for peer connections. Comend makes introductions between users searching for similar needs to inform holistic introductions between peers. This is currently being piloted. Families can opt to have additional factors taken into account such as priorities for care, location, cultural backgrounds, and beyond. Facilitating peer connections across diagnoses will tap into the diversity of rare families of all kinds for shared individual situations. This visibility and inclusivity should result in a far more representative user base than existing touch points, making engagement more comfortable for families while improving the quality of insights researchers can discover.

Turning to this final pillar of bridging families with researchers, Comend will provide a direct and open platform for researchers and families to interface seamlessly. In non-study contexts, families can freely ask questions about their medical complexities while researchers disseminate information directly. For study development, families can voice their needs to help researchers understand how and what they should design. During translational advances, families can grow trusting relationships with researchers to accelerate the process of establishing new patient advocacy groups and mobilize their communities on the platform for study enrolment. Comend is designed to push clinical developments to fruition in a fundamentally more efficient and resultantly sustainable process.

Our primary users are family caregivers of rare conditions. The premise of Comend was mainly informed by this population from our inception. We started by reaching out to KOLs such as public influencers and patient advocates to understand their lived experiences and needs broadly. They helped us access their communities and hold safe conversations to go deeper into the current state of affairs. To this day, we’ve maintained a closed loop with these groups by building prototypes informed by their insights and seeking their feedback on our iterations. As a result, we’ve established strong partnerships, and in the case of our Chief Rare Mom Sierra and many others to come, we are engaging the community through cooperative ownership of the business.

In essence, Comend will empower family caregivers to rapidly understand the existing resources are available to them, to interact with a tailored peer support group, and participate in advancing research for their loved ones. Our solution takes in our population’s key social determinants of health to fill in the lack of family-centric supports and unite a largely siloed population.

Our secondary users are academic and industry researchers focused on rare conditions. Beyond 1:1 interviews, we’ve gathered an understanding of how they are seeking to change their systems by attending conferences, attending lectures, and reviewing their publications. For them, the benefits of patient participation are becoming increasingly clear and desirable. We provide a channel that enables this novel process with minimal overhead.

As a team, we fundamentally believe that the best products and businesses can only be built with an deep understanding of the demographic you’re building for and the empathy to intuit solutions. While neither of us have lived experiences as patients or family caregivers of rare conditions, we have been incredibly intentional to invest first and foremost in our understanding of and relationships with this community while leveraging the abilities we bring from our personal experiences.

We work by following design sprints, as taught to us by our expert advisors in the design thinking field, with 3-5 new and familiar rare families every week. In these cycles, we iterate through potential solutions and co-designing products based on their feedback. Some of these families are now our most ardent supporters, and we have close ties with several communities ranging from the ultra-rare Warsaw Breakage Syndrome and VAMP2, as well as larger communities like Angelman Syndrome. Everything we’ve work on is championed by these open and honest conversations.

We take care to balance what we hear with the practical restraints of other stakeholders. To that end, we’re work with close feedback with Children’s National, private occupational therapists, and cooperatively with other developers such as Cami Health.

We make our intentions and backgrounds transparent with everyone we speak to. We also strive to introduce new possibilities through our fresh eyes and skilled hands, particularly in technology and entrepreneurship. We ensure all of our incentives and returns are aligned with the desires of this community, while being mindful of the priorities of its participants for care and access.

This prize can accelerate the growth of Comend in a number of unique ways.

First, as a team and business aligned with social impact, we appreciate the opportunity to frame and evaluate our ideas in the context of sustainability. The intersection of health and the environment is an emerging niche that is critical to the values with which we operate. As we have learned from our predecessors, sustainability is far better achieved at the beginning of an initiative rather than trying to meet targets after the fact.

To that end, the breadth and depth of judge feedback will be invaluable in helping us validate and position Comend in a way that balances a variety of sustainability-associated perspectives. Increasing the awareness of our efforts at Comend is something that we strive to do continuously, and as such, we would be incredibly excited to further demonstrate our progress in front of a general assembly at the live pitch.

With respect to capital resources, the prize amount would empower us to bring on additional developer talent which would drastically shorten our timeline for rapidly iterating and executing on the roadmap on which our research far outpaces us. We’d like to further emphasize security and privacy in our products. Improving our technology stack with fully compliant and secure systems is a high priority for us. We’re also excited to see how we can use the funds to open more opportunities to partner with organizations, advocacy groups, and other mission-aligned parties.

Last, a partnership with Horizon would open heavy doors with respect to industry insights and testing. We’re aiming to grow our network of medical professionals and industry partners, and Horizon is a natural fit. Your belief in our solution would minimize the friction we face in the way of long-term sustainability and we’re excited for the opportunity to work with you.

Beyond our day to day process, Albert has built indirect connections to this population in relevant spaces.

As a biomedical engineering student, he worked closely with differently abled patients to design and test medtech innovations for conditions such as hip replacement and paraplegia. He also spent time in a hospital’s non-invasive surgical unit to observe and consult on improvements for patient outcomes.

Outside of the classroom, he volunteered for several years as a first responder for emergency medical and mental health scenarios. His volunteering experience also focuses on working with children and their families as a guide and musician at a children’s hospital, and community services such as tutoring, STEM education, and recreational sports.

Both Flawnson and Albert further are connected to industry through professional experiences as academic and industry researchers in the life sciences.

From our competitive analysis, we believe Comend is one of the first solutions with aims to tackle the fundamental problem of fragmentation within the rare disease space, which consists of patients, caregivers, researchers, and health care practitioners. There are existing things that resemble elements of our solution but none that combine them with the same mission at scale. Put another way, there is a gap in solutions that are designed for families first with the understanding that only by providing something that addresses their immediate pains (our resource library) can we bring patient populations together.

Through the lens of sustainability, our solution is designed to scale. It’s designed to add value through the engagement of users themselves which means that as long as we are solving a problem for the community, this platform should be able to operate with minimal overhead effort or cost. For instance, resources will be crowdsourced and the community largely self-moderated (with the support of emerging technologies such as LLMs). We believe that significant ecological benefits will emerge naturally as we improve the informational and social support available to the system’s users, while facilitating a more efficient approach to a currently inefficient process: research.

In the disruptive sense, we aim to engage a diverse and representative rare disease population through culturally-safe social connections while reimagining the research process as one that begins at co-design with rare families.

For the foreseeable future, all of our work is guided by 3 main axioms for real-world impact:

Family well-being

We wish to support families emotionally and educationally in their caregiving journeys to improve the mental and physical well-being of this population.

Diversity, equity, and inclusion, in health.

We wish to offer culturally-appropriate support for underrepresented demographics to equalize the support available for their well-being as well as to improve the representativeness of data for innovations.

Improved quality of research, and ultimately - more treatments available.

Improved representativeness and informed insights will enable research questions and design that are more relevant to their end-users; in turn, this should catalyze the efficiency at which developments can reach the market.

In the next year, we will be looking at traditional social engagement measures as a proxy for impact, being conscientious of the low levels of engagement in current social offerings for rare families.

These include weekly active users, net promoter scores, user growth, and churn. More specific to our model, we will place emphasis on the percentage of "successful" peer and family-researcher connections.

In the coming years, we hope to measure improvements in mental well-being and the representativeness of our user base as compared to the North American rare population (and eventually the global one). We will record the number of citations to work influenced by user insights as well as the number of scientific advisory boards and PAGs that emerge from our community.

Ultimately, we hope to measure improvements in patient-reported outcomes.

Ultimately, we believe that by uniting the rare disease community, we can create impact on problems in well-being and research.

As a logical framework:

• If we create an interface to collect and organize resources for rare disease families, then we can save their time and energy while improving the utilization of available resources. This will also create a common touchpoint through which we can introduce connections and social value.
• If we can account for the holistic needs and situations of families, then we will facilitate engaging introductions and social groups. We will be able to improve the well-being of families through myriad well-evidenced outcomes of socialization. By accounting for those holistic factors, we will also provide a more comfortable space for marginalized populations and host a more representative population which holds high quality insights for innovation.
• By bringing the patient population together, we can provide researchers and developers with scalable access to patient populations which will reduce marketing inefficiencies that manifest as study recruitment expenditure. By bridging these stakeholders, families can receive informational support while becoming empowered to push research efforts. Researchers will receive informed insights and build trust with patient populations for support and mobilization towards their efforts down the line.

Our platform could not exist without its core digital technologies ranging from communication tools to data infrastructure. We also plan for AI to play important, novel roles, albeit subtly. Applications of LLMs include sourcing and generating new resources, assisting users in writing, and in providing auto-moderation tools.

However, as defined by “the application of science and evidence-based knowledge to the practical aims of human life”, the core technology that powers our solution could be said to be the social determinants of health (SDoH). SDoH inform us of the innumerable, largely unknown resources that could improve the lived experience across the diverse situations of patient families. They also inform us of the unaccounted factors that factor into the shared experiences between families that could make for high-quality social connections. Lastly, the influence of SDoH is what renders the insights of patient-informed insights so valuable to future research.

2 full-time co-founders. 2 part-time: our Chief Rare Mom and front-end developer.

6 months on Comend. 3 months on our resource repository (Rarecomend).

DEI is integral to our solution model. Internally, we strive to operationalize those same values. As our team grows, we intend to recruit to more accurately represent the makeup of our primary end-users (family caregivers) as well as society at large, while balancing meritocracy. Our Chief Rare Mom is a strong example of all of those attributes.

We plan also to conduct DEI training with all team members.

Comend will always remain completely free and fully accessible to families. Comend adds business value to pharma, biotech, and related players through patient participation/engagement/co-design and clinical trial recruitment/adherence. A tiered and time-based subscription model is the best fit for incentive alignment between Comend, its users, and its customers. We are also exploring a new business model, that “puts our money where our mouth is”; to encapsulate the belief we have in co-designed research, subscriptions can be replaced/supplemented by ownership/equity in IP/organizations that leverage the insights of our users.

In the near term, we will look at a combination of grants, sponsorships, and vendors, to sustain the costs of our resource library. For the remainder of our work, we aim to close our pre-seed by October with a combination of non-dilutive and equity financing, enabling us to hire the developers we need to build the platform in-house and serve our first customers by the end of the next fiscal quarter.

Our main customers (researchers) will access the platform and its services via a tiered subscription fee based on the maturity of their research that can be supplemented by equity in their respective company or IP. We hope to provide cooperative benefits to families and their organizations as a public benefit corporation or other integrated social enterprise.

We closed a pre-seed investment of $100K USD from Character VC at a $3.3M valuation in March. This came after 2 weeks of fundraising, which we have paused since.

We have also received several licensing requests for our resource library, which we have yet to monetize.