Crowdsourcing Neuroimmune Disorder Specialists

One of the most frequent requests we receive at SRNA is a referral to a specialist who understands TM, ADEM, NMO or ON. Finding these specialists is critical and also a challenge. It is a challenge because these disorders are rare and there are few centers and physicians who focus their specializations on these disorders. Finding the specialists is critical to people’s care, because there is very little published in the medical literature that offers definitive guidance about clinical care based on scientific studies. Today, almost all clinical care, including acute treatment, is based on expert judgment. A physician becomes an expert by caring for a large number of patients with these disorders and thus developing expertise.

We have just launched a web-based resource, the Physician Network, to address this critical need in our community. The network resource allows anyone to browse through a list of experts in the field of rare neuroimmune disorders. You are able to search based on disease expertise (ADEM, NMO, ON, TM) and by specialization (ranging from pediatric care to psychiatry to urology). The physician network is organized geographically so that you are able to search by location, as well.

The most exciting feature of this new resource is that the members of our community will be able to participate in expanding and growing our network of physicians. SRNA physician network includes the TM and NMO Centers at UT Southwestern and Johns Hopkins University and specialists from Multiple Sclerosis centers at major academic hospitals across the country. We want to hear from you! If you would like to share information about your physician or medical professional in your area who has been able to offer you excellent care through your journey with one of these rare neuroimmune disorders, please add them to the network and help us expand it. Using a community collaboration platform to grow our network of physicians and specialists, we can all participate in ensuring that everyone in our community receives care for their disorder. Please don’t forget to ask your doctor for his/her permission to be added to network. SRNA will verify the information that is provided and will confirm that the physicians and specialists added to the network have an open practice and are seeing new patients. Thus, there will be some time between the submissions from our community and when they are posted on the network.

By adding physicians who are offering you great care to the Physician Network, other people in your area will be able to receive excellent care from a specialist. The second very important benefit is that by being identified as a physician or medical specialist in our Network, the medical professional will begin to see and care for more people with these disorders, and thus will develop a more intensive and extensive experience with these disorders. As expert judgment guides acute and long-term care, the development of this experience is of critical benefit to everyone in our community.

It is important to keep in mind that finding a physician in your ‘area’ is going to be a challenge or impossible for some of you. If you live in a rural community or in a state such as Montana or Alaska, that have very few neurologists, scattered across very large distances, you are likely going to have to travel to a different state to find an expert.

Please join us in growing our network. If you have a physician that you think should be on our network, please add him or her to the list by clicking here. We look forward to hearing from you and are excited about the potential to improve medical care!