Myositis Support and Understanding Association (MSU) is excited to announce a new collaboration with RDMD, a company that aims to jumpstart research for patients with Inclusion Body Myositis. RDMD was founded by Onno Faber, a rare disease patient who was diagnosed with NF2 (Neurofibromatosis Type 2) in 2015.
RDMD helps rare disease patients retrieve, access, and accelerate research with their medical records. They work with your hospitals so you can be in control of your medical records data. If you choose to participate in research, de-identified information from your records can be shared with researchers to advance the understanding of your condition. And, you are in control of the sharing of these records at all times through informed consent and opting in-or-out of sharing.
Information from medical records is not currently being collected systematically. This information is trapped at hospitals across the country and only patients have the power to release them and contribute them to help further research.
We’re excited that RDMD is conducting research programs in IBM proactively and, with consent, is sharing all that information with doctors, researchers, and therapeutic companies working in IBM.
Currently, RDMD is working with Dr. Jemima Albayda, M.D., and Dr. Thomas Lloyd, M.D. Ph.D., of Johns Hopkins, to drive this new research but needs IBM patients to sign up in order for the research to move forward.
As a part of our collaboration with RDMD, MSU will help to educate patients and caregivers and communicate the importance of this new research for IBM.
- Communicate the message across all of our social media sites providing patients and caregivers the information to decide if this is the right option for them.
- Set up a live joint webinar with RDMD to answer questions, show a demo of the platform, and to give RDMD the opportunity to learn more about IBM patients and caregivers.
- Periodically provide RDMD with general information about patient and caregiver needs as they relate to this program.
Our mission at MSU is centered on how we can best advocate for you, how we can empower you as a person living with IBM. We can’t think of a more perfect fit than to collaborate with RDMD, where the power of new medical research is with you.
Join us March 7th at 4 PM Eastern for a live, online discussion. Must register to attend. See details at https://understandingmyositis.org/event/rdmd/
If you have IBM and are interested, please read more about the program on the RDMD website at https://app.rdmd.com/ibm
Transparency Note: This is a non-monetary collaboration. We are collaborating for the benefit of the IBM research potential and we have reviewed the RDMD materials and spoken to members of the RDMD Team to ensure we have a full understanding of their work.Tags: inclusion body myositis myositis research sibm