To learn more about MS, treatments, symptoms, research, and resources. This information should not be considered medical advice, and is neither listed as an endorsement or based on user experience. It is also not an exhaustive list, but rather representative of various organizations, groups, and websites. Many of these organizations will have corresponding social media accounts for you to follow along online and engage with others.
We’ve gathered information from around the internet into one place for ease of your use. For expert support, contact your treating physician.
Patient Assistance Programs – U.S.
potential to get the cost of your medicine paid for, typically with no income requirements
Sandoz – division of Novartis
Glatopa (generic Copazone)
There are additional medicines used off-label (approved for use in other diseases), as well as for symptom management. For more information visit the National Institute of Neurological Disorders and Stroke (NINDS)
Clinical trials are an extremely important part of disease management and treatment. Without research none of the medicines that have been developed in the last 20 years would be available. Studies are typically broken up from phase 1 to 4, with approval coming after phase 3.
Because of “guinea pig” syndrome, only about 3 to 9% of people who are eligible for clinical trials participate. But in reality, you get even better care in a clinical trial due to the regular monitoring that occurs. It’s true that some studies use placebo, which can be either best supportive care or non-active ingredient.
Your best course of action is to always ask questions before participating, but don’t let “perception” stand in your way.
To learn more about clinical trials for MS visit ClinicalTrials.gov. It’s not the most user friendly site out there, so if you need help identifying a study, please feel free to contact me. Also, your local academic health centers will likely be conducting research as well. Ask your doctor!
Additional resources for clinical trials can be found at The Center for Information & Study on Clinical Research Participation (CISCRP).
Websites & Groups about MS
Accelerated Cure Project
ACTRIMS American’s Committee for Treatment & Research in Multiple Sclerosis
American Academy of Neurology (AAN)
Atlas of MS Extensive world-wide study of the epidemiology of MS
Can Do MS Lifestyle Empowerment Programs
Consortium of Multiple Sclerosis Centers (CMSC)
ECTRIMS European Committee for Treatment and Research in Multiple Sclerosis
European Medicines Agency (EMA) List of articles under Multiple Sclerosis search
Get Topical Multiple Sclerosis Get the most popular stories in your inbox daily
Health Central America’s fastest growing health information and technology company
Healthline’s Multiple Sclerosis Lingo Page
HealthWell Foundation prescription medicine support
Jack Osbourne’s Blog
Kiss Goodbye to MS Australian initiative
Medical News Today
MedLine Plus MS
Momentum Magazine National MS Society publication
MS Focus MS International Federation’s twice-yearly magazine
MS Views & News
Multiple Sclerosis Foundation (MSF)
Multiple Sclerosis Association of America (MSAA)
Multiple Sclerosis Centers of Excellence (MSCE) Veteran’s Affairs
Multiple Sclerosis News Today
My CounterPane platform to share your MS story and connect with others like you
NARCOMS consortium of MS centers, including bi-annual registry for tracking incidence & prevalence of MS
Neurology.org peer-reviewed Neurology journal
Oceans of Hope global voyage to change perceptions of multiple sclerosis
Partnership for Prescription Assistance – Assistance Program Packet
Patient Advocate Foundation
Patients Like Me
PubMed search multiple sclerosis
Race to Erase MS
Realm of Caring cannabis research and advocacy
Rock Against MS
The Consortium of MS Centers (CMSC)
This is MS
Word MS Day
Some doctors subscribe to the online booking system ZocDoc. Definitely worth seeing if your doctor is listed.
And much more…