Living with multiple sclerosis (MS) can be challenging. You can experience symptoms throughout your body and on any given day you may find that your plans have been completely uprooted due to an unexpected flare-up. When you are living with a condition such as MS, it helps to have a few things in your arsenal: a good healthcare team, a good management plan, tools and hacks that help you navigate flare-ups and a strong support system. Patient advocacy organizations can also help you navigate the up-and-down rollercoaster of living with MS.
Patient advocacy organizations play a crucial role in offering resources, education, advocacy, and a platform for people with MS to connect and share their experiences. In this article, we'll highlight some of the top patient advocacy organizations dedicated to empowering and supporting individuals living with multiple sclerosis.
1. National Multiple Sclerosis Society (NMSS)
The National Multiple Sclerosis Society is one of the largest and most well-known organizations dedicated to improving the lives of people with MS.
They offer a wide range of resources, including educational materials, research updates, advocacy opportunities, and wellness programs. The NMSS also hosts fundraising events to support research and programs aimed at finding a cure for MS.
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One tool we love from NMSS is its MS Navigators, which is a great place to start if you have questions about MS, need help finding a healthcare provider or understanding health insurance benefits, want to attend a local MS-related event, or want to get involved in advocacy work yourself. MS Navigators are available to chat online or by phone.
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2. Multiple Sclerosis Association of America (MSAA)
The Multiple Sclerosis Association of America provides comprehensive support services for individuals with MS. Their services include providing information and resources, distributing cooling products to help manage heat sensitivity, offering MRI diagnostic assistance, and offering a toll-free helpline staffed by trained specialists.
One tool we love from MSAA is its My MS Manager app. The app can help you track disease activity, store your medical information, and generate charts and reports. My MS Manager is available for both Android and iOS devices and is free for individuals with MS and their caregivers.
3. Multiple Sclerosis Foundation (MSF)
The Multiple Sclerosis Foundation offers a variety of support programs and services, including educational materials, peer support groups, and assistance with accessing medical equipment. They also provide financial assistance for medications, MRI scans, and more for those who qualify.
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4. Can Do Multiple Sclerosis
Focused on promoting lifestyle empowerment for people with MS, Can Do Multiple Sclerosis offers programs that emphasize exercise, nutrition, and positive psychology. Their programs aim to help individuals with MS improve their overall well-being and maintain an active lifestyle.
5. Shift.ms
Shift.ms is an online community designed for people living with MS. It provides a safe and supportive platform where individuals can connect, share their experiences, and offer advice. The organization also produces educational videos and resources to help those recently diagnosed with MS.
6. MSWorld
MSWorld is an online community that offers forums, chats, and resources for people affected by MS. It's a place where individuals can connect with others, share their stories, and gain insights into managing the challenges of living with MS.
7. International Progressive MS Alliance
The Progressive MS Alliance is an organization designed with those living with progressive MS in mind. The organization is helping to change the lives of people with progressive MS by conducting more and better studies to hasten the development of drug treatments and other therapies for those affected.
8. MS Coalition
The MS Coalition is a combination of nine member organizations. They all have a shared commitment to improving the lives of people with MS. Not sure which organizations have the best programs for your unique needs? This is a quick way to narrow down the search.
9. MS TeamWorks
Sometimes you just need a little encouragement from others that understand what you are going through. To help you along your journey, the Consortium of Multiple Sclerosis Centers put together a collection of videos featuring people living with MS as well as doctors, nurses, and other healthcare professionals who treat MS. This is also a great way to get some new ideas on how to better manage your MS.
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10. iConquerMS
Want to help you community, but aren't ready to participate in clinical trials? iConquerMS gives you the opportunity to contribute information about your MS history, symptoms, and treatments to researchers. This helps researchers look for patterns and clues about the causes of MS and the best ways to treat it. You can also make suggestions directly to researchers on the types of studies you’d like to see done.
11. MultipleSclerosis.net
Are you a fan of blogs? By subscribing to MultipleSclerosis.net you'll get regular blog posts from a whole bunch of diverse voices, including their own experiences, concerns, and perspective on life and how living with MS impacts it.
12. RealTalk MS
Host Jon Strum has weekly episodes where he addresses everything from stem cell transplants to advances in rehabilitation to healthcare legislation that could affect people with MS.
He also brings scientists, activists, MS caregivers, and others whose lives have been affect by MS into the conversation.
Patient advocacy organizations play an indispensable role in supporting and empowering individuals living with multiple sclerosis. Whether you're seeking information, emotional support, or ways to get involved in advocacy and research, these top organizations are here to help you and your family on your journey with multiple sclerosis.
