The Odylia Collective

Odylia Therapeutics

Odylia Therapeutics, a nonprofit biotech and rare disease community member, is building a centralized marketplace to ensure critical drug-development resources are accessible to patient groups and other members of the rare disease research community world-wide.

In the absence of commitment from industry (biotech and pharma) to therapeutics for rare diseases, patient groups are increasingly leading drug development efforts through direct investment, research oversight, and building new therapeutic-focused companies to achieve their goals of developing a treatment for their rare disease.This is often done on the backs of patients and families who do not have drug development expertise and are also juggling sick family members and full-time jobs. This leads to frustration, feelings of hopelessness, and burn-out which directly impacts the likelihood of success of their drug development efforts continuing, and also the well being of the individual, family, and community at-large.

Driven by the complexity in connecting the disparate pieces of drug development, The Odylia Collective will connect patient groups and the research community with a growing collection of service providers including: registry service providers, manufacturers, clinical CROs, animal testing, cell line producers, biobanking services, to name a few. Centralizing these resources will decrease frustration, wasted time and money, and increase the speed at which drugs are developed for rare diseases. The platform will also integrate resources we are developing through Brydge Solutions to help groups navigate effective vendor engagement. Overall, The Odylia Collective will improve the success rate of drug development efforts and reduce frustration and the burn-out rates commonly seen in rare disease patient communities.

Odylia Therapeutics is a nonprofit organization working in a traditionally profit-driven space. Odylia develops genetic-targeting treatments for rare diseases using a highly focused and nimble approach. Our two core services, Odylia’s Gene Therapy Pipeline and Brydge Solutions work hand-in-hand to move treatments from an early research phase to clinical trials. We are challenging the traditional for-profit approach to drug development, bringing together the communities that will advance drug development programs more efficiently and with aligned interests. By leveraging the strengths of patient advocates, industry partners, and academic research centers, we reduce barriers and streamline drug development.  We know that the technologies to treat the genetic causes of many rare diseases are available right now. The Odylia nonprofit drug development model can make it possible for these therapeutics to reach patients. 

Through each new initiative, Odylia seeks to alleviate a bottleneck in the drug development process and to broaden access to those solutions. The Odylia Collective addresses the increasing need for patient groups to find drug development services. The services exist but groups are reliant on word-of-mouth recommendations or google searching. The Odylia Collective will centralize these resources in an easy to navigate marketplace. The marketplace will also provide resources to patient groups to advise on more effective vendor engagement practices that protect their interests and increase the quality of the engagement overall.The marketplace will be free to access and search. Sustainable funding will be provided by annual listing fees paid by listing vendors through a tiered offering.

The Odylia Collective serves the rare disease patient community by aggregating the vendor space into a centralized marketplace. Service providers are identifiable by keyword searches and stage appropriate suggestions in the platform. Rare disease patient groups interested in investing in and driving drug development for their rare disease can identify vendors with experience working with rare disease groups. Those seeking services can make a profile for free and browse available services or request services not currently available. Vendors can be companies, consultants, and core facilities at Universities, to name a few. Those interested in listing their services can add basic information for free, or pay an annual fee to register additional information and use the platform’s advanced features. Patient groups and vendors can connect directly within The Odylia Collective platform. Odylia staff will support communication between resources and vendors where needed to ensure engagement is streamlined.

The Odylia Collective will evolve over time to streamline processes, enable direct dataset sharing amongst the community (for those who opt into sharing), and integrate new platform features as it evolves. By building a robust ecosystem around the patient-group led rare disease community, which operates differently from industry-led efforts, the Odylia Collective will support the openness of this community and allow them to share both successes and failures.

As maintenance of the marketplace platform reaches sustainability, revenue will shift to supporting new, advanced features based on the feedback from the rare disease community and service providers. Requests so far include service contract template support, pre-reviewed Master Service Agreement templates, data file sharing, and protocol sharing. In advanced iterations of the platform, The Odylia Collective team sees the potential for whole drug development programs to exist in the platform in a way that potential partners could support an ‘accelerator’ type environment through a mix of donations or investments to advance promising therapeutics.

Overall, The Odylia Collective makes drug development resources accessible to the rare disease community and accelerate therapeutic development for rare diseases.

Odylia’s focus starts and ends with patients. We are committed to changing the future for families affected by rare disease around the world. More than 400 million people worldwide live with a rare disease, and nearly 50% of rare disease patients are children. Many face a lifetime of health and personal challenges – pain, loss of physical or mental abilities, and limited access to care, usually with no available treatments. With a focus on maximizing profits, the commercial model used to develop drugs means that there is no hope on the horizon for the vast majority of rare disease patients and their families. 

In the absence of an interest and commitment from industry to develop new medicines for rare diseases, patients, families, and patient groups often pursue drug development directly. These groups are driving the next generation of innovative drug development and business models. They are not just funding researchers,  patient-led groups also build successful businesses, such as Vertex (CF Foundation) and GeneTx (brainchild of FAST, Foundation for Angelman Syndrome Therapeutics). 

But not all patient groups are created equal, or afforded the same access to resources. Odylia Therapeutic has offered a service to patient groups (and the rare disease community at large) called Brydge Solutions since 2021 that helps patient groups more effectively access scientific strategy and operational assistance. Through Odylia’s Brydge Solutions and Odylia’s gene therapy pipeline, we have seen first-hand the disparate nature of the lifesciences vendor space and how many of those vendors want to help patient groups navigate drug development more effectively. The majority of patient groups Odylia works with do not have access to in-house scientific or operational expertise within their patient group volunteer-base. Without access to these resources, patient groups are left to navigate finding these resources primarily by google searches and word-of-mouth, often in-between day time jobs and caring for sick family members.

As an answer to the question Odylia faces often from patient groups, “how do I find a vendor to develop ‘X’ for our patient group?,” Odylia launched The Odylia Collective to enable patient groups to find vendor resources in one centralized marketplace, saving them significant time and money.

The Odylia team built a marketplace framework using the Softr platform to allow us to pilot the concept and to establish how users interact with the user interface and the marketplace in general. We are currently building out additional features to help patient groups navigate by intersecting the platform with resources from Odylia’s educational materials (through The Odylia Library) and from other external rare disease sources. We are currently identifying how best to serve the patient groups who want to use the platform but are at the earliest, beginning stage of the drug development journey. Compared to later-stage customers who know which services they are looking for, we want to ensure the platform is still inviting and helpful to get groups started, which requires more resources to be available from the start.The prototype is being internally tested and de-bugged to better serve real customers. In parallel, we have begun sourcing vendor interest through social media marketing posts and one-on-one engagement with Odylias current vendor base to understand the market positioning, fee structure, and platform function requests.

There is no marketplace currently serving the rare disease community, and no centralized marketplace for lifescience vendors. Patient groups are currently left reaching out to their networks to identify vendors for each need or ‘google-searching’ for the services they think they need. The Odylia Collective will centralize these resources to enable patient groups to search for the services they need. The platform will provide additional insights to help them find the right service through the integration with educational materials (mentioned above for earlier-stage groups). This service  is free for patient groups, or any user once they sign-up by creating a profile. 

For vendors, sign-up on the platform will be free but to list services beyond the basic vendor profile will require a small fee (or free for academic centers and other non-profits) and use of enhanced listing features will utilize a tiered pricing structure to fund the platform maintenance and evolution over time. 

The Odylia Collective serves a population that is currently in need of these resources. Providing this service will save patient groups, patients, and families time, money, and emotional frustration. 

The limited resources available to the rare disease community often drives individuals and groups to operate differently from Biotech, Pharma, and academia in how they conduct business. Rare disease groups are often more open and transparent in their efforts to share learnings, successes, and failures with other groups. 

Different from static listing services (like Craig’s list), over time, The Odylia Collective platform will leverage the communities’ willingness to share and learn from one another to build a more fulsome ecosystem.

As a nonprofit, Odylia has had the privilege of serving patient groups from a position where we can share and offer our learnings back to the community. We have seen this drive our partners to also operate more openly. We will use The Odylia Collective to evolve a platform over time that can enable streamlined services and empower groups to share their learnings and data directly with the community. Over time the platform will not just provide a much needed centralized marketplace, but we think it will accelerate and increase the likelihood of success of many rare disease drug development efforts…. and even become the marketplace of choice for next generation drug developers and investors in the rare disease community.

Odylia Therapeutics is developing and launching The Odylia Collective. Odylia Therapeutics is a nonprofit biotech (501c3) registered in the USA, with the mission of accelerating therapeutic development for rare diseases. Odylia currently serves the rare disease patient community through our internal pipeline of gene therapies in development, Brydge Solutions which makes our drug development expertise available to the rare disease community through a fee-for-service structure, The Odylia Library (through which we make our learnings from Brydge Solutions available to the public through a growing library of resources), and our newest initiative, The Odylia Collective. Odylia has a history of leveraging our expertise to launch new initiatives that broaden our impact and allow us to reach more rare disease patient groups than what we can achieve solely through our drug development pipeline. Through our own pipeline efforts, and largely through our work with patient groups through Brydge Solutions, we know the value of centralizing resources first-hand. The Odylia Collective began with Odylia’s own vendor network and patient group partnerships as a starting point. The Amgen Prize would allow Odylia to catalyze and formally launch The Odylia Collective through  financial support and enhanced connections and partnerships. Our prototype has brought The Odylia Collective out of the ideation phase and now we are seeking critical funds to fully launch the platform. To achieve this goal we will utilize funding to launch a robust platform and engage the community around the effort. Winning The Amgen Prize would shine a spotlight on the current bottlenecks and the impact The Odylia Collective as a simple, straightforward solution can have by providing a much needed resource to the rare disease community.

Odylia is a member of the rare disease community, we partner with various stakeholders in the rare disease community, and at an individual level each member of our team is either a rare disease patient or has a rare disease family member. Most of our staff, Board Members, and volunteers sit on rare disease and nonprofit Boards so we have an extensive knowledge base within the DNA of the company around the rare disease experience. Odylia is not a patient advocacy group, we are a nonprofit biotech and to our mission we bring deep drug development expertise, innovative thinking, and know-how in the rare disease and genetic technologies research and development space.

Through Odylia’s work in drug development we have experienced first-hand the obstacles that exist to finding the right vendor in a timely manner. Through Brydge Solutions, we often work with groups who have wasted months if not years trying to navigate the vendor landscape and we offer this as part of our work through Bryge Solutions. 

Given our internal experience and our position in the rare disease community, we are well positioned to both understand and recognize the problems and develop an effective solution. Additionally, we have initiated discussions with patient groups and our strategic vendors partners on the value of The Odylia Collective and what features they would like to see. We have received enthusiastic feedback and support for the effort and even requests for advanced features already (“One of the big challenges with engaging a vendor is signing MSAs.  If there is a way to have templates for easy contracting, that would be amazing.” -undisclosed vendor request). We have also sought feedback specifically from data scientists who are rare disease parents and we have worked with on new concepts in the past. Feedback on a recent phone call cited our approach to work establishing and engaging Patient Advisory Boards as “revolutionary and inspiring to be doing so at such an early stage in development.”Odylia has an extensive network of engaged and passionate rare disease advocates we can tap into and a history of doing so for each of our programs.

The short-term goals over the next year include:

• securing funds to properly resource build-out and launch of The Odylia Collective
• enrolling at least 30 patient groups 
• engaging at least 10 paying vendors 

By year two, The Odylia Collective is expected to be fully financially sustainable at a level that will fully cover maintenance costs, hiring a part-time database engineer and app developer, and hiring a community engagement expert. We expect revenue generation in year three to enable the advanced feature implementation, informed by input from both the patient group community and vendor. By year five, the platform should be fully self-sustaining, and working towards a version two-or three-type platform evolution that facilitates advanced data sharing across the community.

Metrics for success focus on the number of sustained account holders, sustained vendor listings, engagement between the two groups, and revenue growth over time. Long-term success would reflect an advanced platform that empowers a rare disease community to develop drugs from a more informed position. The metric for success long-term would be the number of sustained patient groups actively engaging through the platform to further novel therapeutics in development, and eventually through approval. This would reflect a rare disease patient community that has better access to critical resources and can more effectively navigate a complicated landscape.

The Odylia Collective will allow patient groups, rare disease patients and families, and rare disease researchers to log into an easy to navigate database that is searchable by keyword or vendor to find the drug development services they need, all for free. The database will also provide free resources for groups who are just starting or don’t know where to start to learn about the services they might be interested in and how to more effectively engage service providers in a way that protects the patient group’s interests. Since there is no such marketplace currently, patient groups will no longer need to reach out through their network to find resources, or to google search for services and service providers. Given the collaborative nature of the rare disease community, The Odylia Collective platform will allow vendors to highlight their prior work with rare diseases and which patient groups they have worked with. This allows for organic community vetting of resources and encourages transparency from vendors. 

The Odylia Collective comes directly from the needs we have seen in the rare disease patient community. Patient groups reach out on a weekly basis to inquire about the vendors or services we recommend. With the groups we partner with directly, through our drug development pipeline and Brydge Solutions, we provide a service that fills this need by suggesting, seeking, and engaging vendors on behalf of patient groups. We recognize we can provide this service to more groups and have a broader impact if we develop a marketplace to engage the broader landscape. This is the foundation for The Odylia Collective. 

Through oversight of the platform, we will learn how patient groups search for services, how they engage vendors, and the quality of those engagements, or whether they continue to hit obstacles. Those learnings will be used to directly evolve the platform over time to better serve the rare disease patient community. Ongoing community surveys will seek to better understand the needs of the community and how effectively The Odylia Collective addresses these needs. Overall, The Odylia Collective will streamline the drug development process for rare disease patient groups, patients, and families, which will reduce costs, expedite timelines, and reduce burnout and stress.

Two staff members, one volunteer, and one consultant work on The Odylia Collective. The Odylia Collective was not realized in Odylia’s 2024 budget so work on the Softr platform or business development efforts are  limited. We will secure financial resources to hire an app and database developer at 30% for the full platform launch (expected 3 months from funding to take the platform to soft launch, and 5 months total to public launch), and to commit budget (in 2025) to staff member and consultant support for management and Business Development engagement until sustainability is reached, is expected with 20-30 customers.

The Odylia Collective was conceived two years ago and development work began six months ago. In the past six months we launched the concept publicly through social media posts to identify interest in the concept.  Business development efforts are underway with a few service providers to understand potential pricing and the market interest. The platform build began 4 months ago on a free-trial basis on the Softr platform. Softr enables no-code app building so Odylia can work on the early pilot build-out for free while financial resources for a more robust build-out are being established. 

Odylia has zero tolerance for discrimination or racism in our organization and in our work with our partners. As a female-led organization we are committed to diversity, equity, and inclusivity and through our work we embrace a diversity in thinking and mutual respect. We have established work-place policies that allow us to embrace a more flexible work environment and works for the diverse needs of our staff. We are a virtually operating nonprofit so staff can work from home which allows more flexibility in working with staff from any geography, with a range of mobility abilities or health issues, or diverse family care situations. We have a generous parental leave policy that embraces the emotional and physical health benefits of providing protected times for new parents with their newborn. Our staff, our Board, and our volunteers reflect the diversity in stakeholders we work with and work for in the rare disease community, including rare disease patients and those with disabilities.

Drug development for rare diseases is often led by patients and their families. The rare disease community spends countless hours and dollars searching for and funding treatments to mitigate the effects of their rare disease. All too often, a lack of expertise can result in years of wasted money and time, and burnout.

The Odylia Collective is embedded in Odylia Therapeutics and will provide a direct to group and direct to consumer service. The value of the marketplace to rare disease patient groups, patients, and families is recognized through the reduction in wasted money, expedited timelines and more direct paths for drug development, more productive investments from patient groups in drug development efforts, and importantly in the emotional toll of the process: reduction in stress and frustration and feelings of helplessness. By centralizing a marketplace of services in one easy to navigate system, patient groups can more quickly identify the resources they need instead of relying on search efforts and word of mouth. By integrating educational resources on drug development and navigating vendor engagement, The Odylia Collective will facilitate the patient group journey in drug development and increase the ability of each group to make informed decisions.

Patient groups and other rare disease community members can create a free account, through which they can identify services and vendors through keyword searches and stage-appropriate suggestions in the platform. After identifying services vendors of interest, they can connect directly with vendors within the platform. Communications through the platform will allows Odylia staff to help service ‘seekers’ navigate issues that may arise and reach out to vendors that may be non-responsive or having a hard time connecting effectively with the customer. 

Service providers, whether companies or individuals, will gain access to a network of rare disease groups, each at various stages of research or therapeutic development. Reasons to join:

• Network expansion and early engagement directly with the customer

• Streamlined and assisted communication by the Odylia staff when needed

• Evolving features on the platform will enable more rapid contracting and cross program information sharing to increase efficiencies and decrease repetitive tasks usually performed by CRO staff

Through sustained revenue streams, The Odylia Collective will evolve over time to streamline processes, enable direct data sharing amongst the community where patient groups want to enable this function, and integrate new service features as the ecosystem grows.

The Odylia Collective will be funded through a fee-for-service structure by linking and providing access between a marketplace of services and a potential customer base. Customers seeking services will access the marketplace through an account which is free to make. Service providers can list basic information for free, to ensure broad access for all organization types, but an annual listing fee is required to provide a more thorough listing of services and access to additional platform enhancements. 

The annual listing fee will be used to maintain the basic functions of the platform and additional functions will be funded through additional revenue generation once more service providers sign-up. 

Initial funding of the platform build-out by an expert will be funded through a mix of grants and/or a potential founding sponsorship in exchange for naming rights and additional financial benefits while using the platform. Once the platform is established, the fee-for-use structure will fund maintenance and ongoing enhancements and The Odylia Collective is and will remain embedded within Odylia Therapeutics. Our initial discussion with service providers indicate that the annual fees they would be willing to pay and the amount of enthusiasm we have heard so far from various vendors would create an easily sustained revenue stream. With the build-out of additional features over time The Odylia Collective will introduce tiered fee structures that will allow evolution of the platform with minimal risk.