We empower patients and communities to change the way that drug development happens in rare disease.
Photo Credit: sv.ai NF2 Hackathon
“Thanks to RDMD, I could share remotely my daughter’s MRI with 3 doctors in the USA and Europe and get their opinion if a surgery was needed or not.”
“This is the first time we’ve met someone who’s about our age and of our mind and of the same kind of technology-forward approach to living with NF.”
Four years ago, I started experiencing hearing loss in my left ear. Doctors prescribed me steroids, thinking it was an infection, but the deterioration did not slow down. After numerous failed treatments, a specialist finally ordered an MRI, whereupon he discovered a large tumor on my left hearing nerve. Months later, another tumor was discovered in my right hearing nerve, and another on my spine. I was diagnosed with a rare genetic disease called NF2 (Neurofibromatosis Type 2), a disease that affects only 1 in 30,000 people. It completely changed my perspective.
All my life, I’ve been a technology entrepreneur, beginning with a tech company I started in high school. I’m now applying everything I’ve learned throughout my career to build RDMD, where we’re helping to accelerate treatments for patients with rare disease. Our mission is ambitious, but I can’t imagine working on anything more important than this.
Photo Credit: from Neo.life by Damien Maloney
RDMD is on a mission to accelerate treatments for patients with a rare disease, affecting 1 in 10 people worldwide. Rare disease patients suffer from a lack of treatment options because a smaller patient group means fewer resources are devoted to the development of treatments. The main challenge is that pharma companies cannot get efficient access to the data needed to bring therapies to market. Patients, however, are highly motivated to contribute, as their lives are at stake and no other options are available. We work on behalf of patients to generate regulatory-grade clinical and molecular data in a central place.
By generating the data proactively–before the next phase of a clinical trial or even before a pharmaceutical program exists–we can de-risk and speed up the entire clinical trial process (currently the probability of success in orphan diseases is a mere 13.5%). Since we invest in the disease area itself, agnostic from any drug in particular, we can leverage the same data for multiple therapeutic candidates.
Only about 5% of all 7000 rare diseases have an approved therapy.
We see a world where patients are at the center of the healthcare equation.
Traditionally, pharmaceutical companies have tried to get exclusive access to patient and data. Modern consumer technology and the shift to electronic medical records make it possible to democratize the availability of all health data, resulting in healthier competition. We believe this trend can create a tremendous shift in the availability and the quality of therapeutics for rare disease. RDMD enables patients to unlock their own data in order to create fertile ground for rare disease research & development.
What We Do
At RDMD, we empower patients and families to get access to and benefit from their own medical data. This data is often scattered across various health facilities and hospitals they've visited, and is in a format that is not useful for clinical care or research. We help patients retrieve this data, organize it, and contribute it meaningfully, to power research with the top institutions, researchers, and companies that work in their condition. And we do the hard work on behalf of patients and families.
Patients have used RDMD to:
Keep their records up-to-date and viewable from anywhereCoordinate a remote consultation with a top specialist in their conditionSend their medical history and information to family, new doctors, and researchers via a simple online link (no more faxing and mailing CDs, ever again!)Meaningfully contribute their de-identified data to advance research with foundations, hospitals, and industry partnersLearn about research projects they've contributed to and can participate in
We work thoughtfully and deeply in each condition that we work in. Thus, we work hard on patients' behalf to make sure the experience is highly specific and relevant to their condition. We believe that this is the best way we can make a meaningful difference in how research is done in rare disease.
For Researchers and Industry
For rare disease researchers, both academic and commercial, we are a partner in generating the highest-quality clinical data, in a fraction of the time it typically takes. By using our technology to tackle the biggest roadblocks in clinical research: 1) accessing properly-consented patient medical records, 2) robust, disease-specific research tools, and 3) deep abstraction of patient records to generate real world data, we can significantly de-risk therapeutic programs in rare disease. The data that we extract and the evidence we generate is research-grade and regulatory-compliant, backed up by original documents to ensure quality control.
Partners have used RDMD to:
Generate real-world-evidence to support therapeutic programsConduct rapid retrospective studies (including natural history) to inform trial design Significantly reduce administrative and research burden on clinical sites and investigatorsSupport regulatory submissions Engage an activated, data-driven, patient community
Clinical Abstraction Lead
Kristina Cotter, PhD
Dione Kobayashi, PhD
Gregory Enns, MD
We are determined to build a strong company around our mission, and be able to invest in as many diseases as we can to generate better outcomes for patients. We work as a team, help each other to be the best version or ourselves, promote open communication, learn from our mistakes, and do good in the world.
Want to help us building our product?
We are looking for strong product engineers to help us build out our patient-facing product as well as our internal clinical operations toolkit.
A Bachelor's degree in Computer ScienceA strong background (5+ years of experience) across product and engineering, with demonstrated ability to turn vision into engineering priorities and successful product launches.Ability to be scrappy and contribute seamlessly across the stack (web, backend, and infrastructure) Being comfortable operating independently with a high degree of ambiguity is key. Our ideal candidate handles rapid change gracefully and iterates quickly, yet thinks 3 steps ahead and knows when to evolve the platform for scale. Our current tech stack is made up of NodeJS and React, but we’re looking for someone who’s language agnostic, well-versed in a range of technologies, and has a knack for picking the right tool for the job. A background in healthcare is not required although a definite plus. A passion for our mission is a must.
Patient Sign Up
We currently are working on the following conditions. Select the condition you're interested in to continue.
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If you are a patient looking to join RDMD, please do so using the following link:
RDMD Secures $3 Million in Seed Funding to Drive Patient-Accelerated Drug Development in Rare Diseases
RDMD to partner with biopharmaceutical companies to provide regulatory-compliant data for use in rare disease research and drug development
Proceeds to support online patient-focused platform, initially focused on forms of neurofibromatosis, and expansion into additional rare diseases
SAN FRANCISCO, California – August 20, 2018 – RDMD, a healthcare technology company dedicated to accelerating research for patients with rare diseases, today announced that it has raised $3 million in seed financing. The financing was led by Lux Capital, with participation from Village Global, First Round's Healthcare Co-Op, Garuda, Shasta Ventures and various angel investors from the biotech and healthtech industry. 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.
“RDMD was born out of my own personal journey with a rare disease called neurofibromatosis type 2, a disease that affects only 1 in 30,000 people. I’ve been developing technology products my entire life, and I wondered if we could marry a powerful data and analytics platform with patient data to gain insights into rare diseases,” said Onno Faber, RDMD founder, chairman and head of product. “That idea turned into reality with the founding of RDMD. We have since pioneered the development of a powerful platform that leverages deep data insights to empower rare disease research and drug development, as well as an application that allows patients to take the management of their disease into their own hands. This financing enables us to expand our efforts and tailor our approach for the needs of any rare condition, providing real value for both patients and drug developers.”
Proceeds of the financing will be used to further develop the company’s platform, expand the leadership team to support demand and growth, generate high quality data, expand into new rare conditions, and work with partners to advance their research and development programs.
“There are over 7,000 rare diseases, affecting 1 in 10 people, yet less than five percent of them have an FDA-approved therapy. Collectively, it's a massive problem,” said Adam Goulburn, Ph.D., general partner of Lux Capital. “Unlike the more well-resourced conditions like cancer and diabetes, rare diseases suffer from a lack of data infrastructure. As a result, many programs fail to even get off the ground. RDMD represents a central place dedicated specifically to the problems in rare disease, where we aim to create fertile ground for therapeutic programs.”
Curation of Real World Data for Rare Disease Research
RDMD aims to partner with rare disease biopharmaceutical companies to provide deep clinical electronic health record (EHR) data from patients, rare disease doctors, and foundations. The company’s proprietary database of research-and-regulatory-grade evidence can be leveraged to gain insights on natural history, endpoint selection and evidence generation for regulatory submissions.
RDMD’s technology platform transforms unstructured data from medical records into disease-specific data models that can be readily analyzed. Most data from medical records are currently unusable for research because they are trapped in physician notes and progress reports that cannot be easily mined. RDMD works with top research doctors in each condition to define the relevant data measures and biomarkers to collect in order to generate the most relevant insights for clinical development. RDMD’s technology enables audit-trails and links to original source documents to ensure compliance and quality control.
RDMD is currently collaborating with researchers at the National Cancer Institute to track pain symptoms in people with a type of neurofibromatosis called NF1. The company has also partnered with the Children’s Tumor Foundation to generate real world evidence from NF patient medical records across all forms of neurofibromatosis, including NF1, NF2 and schwannomatosis. RDMD plans to expand into rare neurological and inherited metabolic diseases.
“As our programs advance into clinical stage, we have a greater need for robust evidence that can be used to inform and support these programs,” said Annette Bakker, Ph.D., president of the Children’s Tumor Foundation. “We’re excited to partner with Onno and RDMD to move to a truly patient-centric approach to drug research and development.”
A Disease-Specific Platform for Patients
RDMD has also created an application that offers patients the ability to view and control their complete medical records. With patient authorization, RDMD will retrieve medical records on a patient’s behalf, and keep this information updated over time. RDMD displays patients’ records in a disease-specific timeline with summaries of their medical data. Patients fully own their data, control whether to contribute their de-identified data to research, and can delete their account at any time.
RDMD’s first application, which is focused on neurofibromatosis, has allowed patients to share their private records with new facilities they visit, and seek remote consults from experts in their condition. Patients have also provided informed consent to RDMD to share relevant biomarkers, endpoints and measures with researchers such as biopharmaceutical partners, academic researchers and nonprofits working in the condition.
“To date, we have enrolled more than 150 patients with neurofibromatosis to use our application. Patients have already been able to connect with or get second opinions from top doctors from across the country, coordinate ongoing care and contribute their de-identified data to research their condition,” said Nancy Yu, chief executive officer of RDMD. “It normally takes millions of dollars over several years to gather this type of data in rare diseases. For the first time, we have a centralized and consented set of data for use in translational research, for a fraction of the time and cost.”
Founding Team and Board of Directors
RDMD’s founders include:
Onno Faber, RDMD founder, chairman and head of product; NF2 patient; and former CEO of TapTalk, a video messaging platform Nancy Yu, RDMD co-founder and chief executive officer; former head of corporate development at 23andMe; and former biotechnology investment banker
RDMD’s board of directors includes Nancy Yu, Onno Faber and investor Adam Goulburn. In conjunction with the financing, Renata Quintini, partner of Lux Capital, joins as a board observer.
RDMD is a healthcare technology company dedicated to accelerating treatments for patients with rare diseases. 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. RDMD was founded in 2017 by technology developer Onno Faber, following his diagnosis and journey with the rare disease neurofibromatosis type 2. The company is backed by Lux Capital, Village Global, First Round's Healthcare Co-Op, Garuda, Shasta Ventures and a number of angel investors. For more information, visit www.rdmd.com.
About Lux Capital
Lux Capital is a venture firm based in New York City and Silicon Valley investing in counter-conventional, seed and early stage science and technology ventures. Lux manages $1.4 billion in assets across multiple funds. For more information please visit www.luxcapital.com or follow us on Twitter @Lux_Capital.
Patient Operations Lead
Charlene is a clinical research expert with extensive experience coordinating and guiding patients through clinical trials. Born in Manila, she came to California from the Philippines in 2007. After studying physiological science at UCLA, Charlene worked as a clinical research coordinator at UCSF and Stanford. She’s excited work with RDMD to drive drug development, expedite research, and get patients better access to information and treatment options.
One day in 2011, a very busy UCLA pre-medical student found some time between her demanding course load and her part-time job as a medical clerk to browse the newspaper for volunteer opportunities. There she came across a small ad: “Volunteers needed in clinical research.” Though she had never before been involved in any kind of research, she was itching to get some clinical experience and to work directly with patients—so she immediately responded to the ad.
That was Charlene Fernandez, seven years ago, and today she is not only a seasoned clinical research expert—she’s RDMD’s newest team member. Born in Manila, Charlene has had her eyes on the medical field since she was a child: when she was eight years old, her father passed away from cancer, and she became determined to go to medical school and cure the disease. In 2007, Charlene and her family moved from the Philippines to Fresno, CA, where Charlene entered 10th grade. Though her mother offered to pay for a college education back in the Philippines, Charlene elected to attend UCLA—and to pay her own way through school. She did just that, while also completing her pre-med requirements and earning valuable clinical research experience.
She went on to work as a Clinical Research Coordinator at UCSF’s Division of Vascular and Endovascular Surgery and then at Stanford’s Cancer Clinical Trials Office. Throughout her career, no matter the type of trial or medical subfield, one thing has remained constant: Charlene’s dedication to patients. “I always strive for the best for patients,” says Fernandez, “I ask myself: at the end of the day, does it help the patient? Yes? Then I’m going to do it.”
Charlene joins RDMD as the Patient Operations Lead. She will lead RDMD’s interaction with patients, whether retrieving medical records from hospitals, onboarding, extracting data, developing efficient and secure protocols, or answering patient questions. RDMD is thrilled to have Charlene on the team, and even more excited that the RDMD community now has such an experienced and enthusiastic point-person.
When she’s not doing clinical research and giving her all to support patients, Charlene enjoys running, cooking, eating out, and traveling. She even writes and takes photos for a food and travel blog, DineOutDiaries… check her out on Instagram: @dineoutdiaries
Founder, Chairman, and Head of Product
Onno is a technology entrepreneur who has spent his entire career building products that people love. His last company, Taptalk, offered a video messaging service that attracted a loyal base of regular users. As a rare disease patient himself, he is passionate about accelerating rare disease research and building fertile ground for new therapies. Onno recently organized an artificial intelligence hackathon at Google on his own genome, attracting over 300 diverse participants from the tech and medical industry.
Co-founder and CEO
Nancy previously led Corporate Development at 23andMe, the largest consumer genetics company. She worked on 23andMe’s next generation sequencing platform, drug discovery strategy, and business development programs. Before that, she worked on Wall Street as a biopharma investment banker. Nancy began her career doing genetics research at the University of Pennsylvania. She's passionate about bridging the gap between patients and industry to make drug R&D cheaper, faster, and better.
How RDMD keeps your data private and secure
(and keeps you in control of it)
You may have questions about how RDMD keeps your health information safe and secure—many other patients have reached out about this very thing. We take security and data privacy very seriously—in fact, it’s one of our top priorities. We created a summary below to help you understand our privacy and security efforts. We work alongside experts in data privacy and security to ensure that the proper controls are in place for the data you trust us with. We know how sensitive your health information is and how big a deal unauthorized access would be. Please feel free to reach out to us about anything relating to data privacy and security. Below we explain in more detail how we keep your data safe.
1. Your RDMD profile is private
When you sign up for RDMD, you’ll get a private profile where you can manage all of your medical records, which we will retrieve for you on your behalf (all you have to do is sign up, and we’ll guide you through in a few simple steps). You can choose to share this information with a new doctor, for example, but you will never be contacted about it by anyone outside of RDMD—unless you give explicit permission.
2. We de-identify your data
If you choose to participate in RDMD Research, you can contribute your de-identified health information to researchers who are interested in learning more about your condition. “De-identified” data means data that is stripped of any personally identifiable information, such as your name, birthday, address, email, or any other information that someone could use to find you. This way, a researcher who gets access to your personal health data will not know that this information belongs to you. We do this to protect your identity and to minimize the risk that anyone can trace health data back to you. Most of the time, we aggregate, or “pool,” your de-identified data with that of other patients, so that all the data is shown as a batch. We will never share your name or identifiable information with external researchers unless you explicitly tell us to. (And even then we will make extra sure that you are certain!)
3. You control where your data goes
Not only do you get to choose whether to contribute your de-identified data to research broadly, you also get to choose which researchers can access this data. Of course, RDMD tries to ensure that each research project we facilitate is ethical, appropriate, and compelling, but on the off chance that you do have a personal concern, it is your right to withdraw all research involvement. We want to be transparent about which researchers get access to your data, and for what reason, so we do our best to show you which research projects have used your de-identified data. Keep in mind that if you do consent to contribute your data to research and your data becomes used in a study, it cannot be withdrawn after the study has started.
4. Only authorized and trained personnel will have access to your data, and only for processing and research purposes
Because we need to retrieve, handle, process, and analyze your medical records, we have specifically trained personnel who will have access to your identifiable data. However, we don’t allow just anyone, or any employee at RDMD to gain access. Only designated individuals who are trained in the proper handling of sensitive personal health information and human subject biomedical research will be able to login and gain access to medical records--and then only if the data has a direct connection to their work. We conduct background checks, consult references, and make sure such individuals are properly contracted with RDMD, legally binding them to keep your information private, secure, and confidential. Additionally, we train all our employees on privacy, security, and research best practices to make sure that everyone is up-to-date on our internal procedures. If there are any suspicious activities, we respond right away.
5. We have tough security technology and policies in place
We’ve spent a lot of time investing in the latest technology and software to ensure that all your data is protected and secure. We regularly seek advice from top security and data privacy lawyers, consultants, and experts, who help us build our technology as well as our policies. We even appointed a Chief Security Officer, who makes sure that everything on our platform—meaning both hardware and software—is protected from unauthorized access and breaches as much as reasonably possible. A few examples of our privacy and security measures include:
Separation of databases: For research purposes, we may export de-identified data to researchers who need to analyze the data. However, the database where we store exportable data is completely separate from the database where we store your identifiable contact information. That way, if a breach occurs in the database for exportable data, it would be extremely difficult to connect that data with your personal information.Encrypted hard drives: Encryption is a way of protecting data from people you don’t want seeing it. For example, when you use your credit card on Amazon, your computer encrypts that information so that other people can’t steal your information as it’s being transferred. Similarly, if you have a file on your computer that you want to keep secret, you can encrypt it so that no one can open that file without the password. We encrypt our hard drives so no one else can get access to the patient-data inside. SOPs and training: SOP stands for “Standard Operating Procedure.” We write, maintain, and follow SOPs for every step of our process, from requesting your medical records on your behalf to uploading your data so you can access it to working with patient data later in the process. For example, we have a procedure in place to verify that the file we are processing is indeed yours, and we match it to your name and birthday. Everyone at RDMD is trained on these SOPs, to ensure that privacy and security are part of the entire fabric of the company.
Updated September 21, 2018