Why advocacy is important for the NMOSD community

This article is part of a series about neuromyelitis optica spectrum disorder for NMO Awareness Month. Go here to read more.

Advocates are not chosen; circumstances force people into standing up for their rights. That’s how many people living with neuromyelitis optica spectrum disorder (NMOSD) become patient advocates.

Through support and representation, an NMOSD patient advocate helps ensure that everyone with the condition who’s navigating the healthcare system has access to appropriate care, treatment, and resources.

Patient advocacy

When you’re representing a rare disease like NMOSD, you should first focus on creating awareness. The more people know about NMOSD, the faster diagnoses can be made, and the sooner treatment can begin. Every conversation, every shared story, and every informed medical professional help build a stronger network of understanding and support.

Below are some types of advocacy.

• Personal means speaking up for yourself in medical settings, asking questions, and making informed decisions.
• Community includes raising awareness about a condition, starting support groups, and helping others understand their rights.
• Policy is engaging with lawmakers, healthcare institutions, or pharmaceutical companies to improve access to treatment, funding, and research.

There are many other ways to advocate for NMOSD, including starting a blog, joining a support group, and taking part in a clinical trial.

Don’t work for free

You don’t have to attach yourself to a not-for-profit to be an impactful advocate. But if you decide to join one, always ask questions about its financial status. Not-for-profits must publish financial statements and disclose how they earn their income.

Though some not-for-profits ask for volunteer support, you should never work for free. The sad reality is that many patients live at or below the poverty line. Some not-for-profits ask major donors, including pharmaceutical companies, to cover the expense of their contracted workers.

You might instead become a patient advocate for a pharmaceutical company. Many have departments devoted to the patient experience, offering outreach, councils, and research. You may be able to participate in one of these and be compensated for your time.

Using your voice effectively

Advocacy isn’t just about awareness, it’s also about influence. You can engage with healthcare providers, policymakers, and researchers to push for better treatment options, increased funding, and improved access to care.

Whether you’re speaking at a conference, writing to elected officials, or sharing your experience with newly diagnosed patients, your voice matters.

Building a support network

Admittedly, advocacy can be isolating. But it doesn’t have to be.

You can create a powerful support system by connecting with others who share the same struggles. Whether through online communities or in-person meetups, building relationships with other advocates can amplify your message while you provide strength to one another.

Living with NMOSD is a challenge, but by advocating for yourself and others, you can help shape a future where patients have a louder voice, better care, and more hope.

Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.