We’ve reached an important milestone and, though there’s a lot more work to do, we wanted to share the good news with you. We just raised an initial three-million-dollar investment to build our product and technical infrastructure, as well as support the operations of working with our first hundreds of patients in several disease areas. As many of you already know, we’re currently focussed on NF2, NF1 and schwannomatosis, but we’re expanding into more disease areas soon. Our goal with RDMD is ultimately to be there for all diseases in need. I want to take this opportunity to dive into what this round of funding means for the community, what you as a patient can do to help, and what we can do for you in return.
RDMD has developed a technology platform that generates deep data insights to accelerate rare disease research and drug development, as well as a patient application that empowers patients and families to get access to and benefit from their own medical data.
There are currently big gaps — in the area of rare disease particularly — between the science, what’s technically possible in terms of treatment development, and the investments coming from the pharma industry. With RDMD, I hope to bridge those gaps, and create fertile ground for rare disease therapy development. Even for diseases for which there is currently no research interest… yet. I strongly believe the way to garner that research interest, and subsequently increase funding for novel treatments, is by activating the patient and research communities, and providing more efficient ways for the two to work together. RDMD is here to pave the way, and to invest in rare diseases proactively.
As a rare disease patient myself, I am uniquely positioned to understand the problem and to make it exciting for talented people to start working on this. I will also ensure the organization we’re building is accountable to patients, by doing things like letting you own and control your own data. We will be as transparent as we can, disclosing the research projects that may use your de-identified data (in order to help you!), including academic researchers trying to improve our care, as well as pharmaceutical companies trying to bring a therapy to the market. This, I feel, aligns perfectly with what I wanted as a patient.
I realize this is a huge effort, and I can’t do it alone, in my spare time. We will use this initial funding (yes, this is just the beginning) to build our team and grow our patient communities (if you haven’t signed up, please read more about doing so here). We’re also set up to build partnerships — we are actively working with foundations, research centers and doctors to make this platform work for everyone. This is a very exciting time for us, and I can’t wait to get more of you involved, to show you the product, and to explain more around what we are doing and why we think this is a critically important piece of the rare disease puzzle.
Last, but not least, we’re building this product for you. However, a success in a disease we work on also depends on you. We need your participation and we’ve made it super easy to sign up. We’re also doing the heavy lifting of requesting medical records and abstracting key data, constantly investing in ensuring the security and privacy of our platform, and ultimately putting you in control of your data. We are always open to questions and hope to remove any doubt about signing up. Please find out more about signing up here or contact us at firstname.lastname@example.org with any questions or concerns. We hope you’ll take the step and sign up, and we look forward to having you on board.
More to come — stay tuned! (sign up for our newsletter below)