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  • Writer's pictureAreeg Sweis

How to be a Patient Advocate for Rare Disease Patients

Have a family member, friend, co-worker, or classmate dealing with a rare disease? Do you feel the need to advocate more for their medical conditions? If you answered yes to both questions, it’s time to look into patient advocacy.

Being a patient advocate involves assisting patients to in various roles to help improve their quality of life. Patient advocates act as volunteers providing care at a patient’s home, a hospital, or a nursing home to help them with their day-to-day needs.

If you’re interested in becoming a patient advocate, follow these tips:

1) Conduct research their rare disease

It’s vital that you take time to research the disease or diseases you plan to advocate for. Conducting research beforehand can assist with gaining a better understanding of how to care for and provide resources for rare disease patients. Also, if needed, you can help them understand their care plans, prescriptions, and much more when you’re well-informed about their disease.

2) Join a NORD Patient Advocacy Group

NORD is the largest organization that provides support to rare disease patients and their families. It’s highly recommended that any patient advocate for rare disease look into NORD’s website to find rare disease advocacies near you that you can join. Rare patient advocacy groups are composed of patients, caregivers, health departments, healthcare providers, pharmaceutical companies pushing for better policies, improved healthcare options, accessibility, and increased research opportunities. Public advocating for rare disease can push for improved polices that

3) Be empathetic and supportive

Lastly, one of the most essential things you can do as a patient advocate is to be supportive of the rare disease community. If you know someone dealing with a rare disease, be there for them in any way possible. Whether it’s getting their groceries, helping them refill prescriptions, taking them to a doctors’ appointment, or just providing a listening ear, directly helping a rare disease patient is one of the best ways to advocate for them.

Patient advocacy is vital for assisting patients in navigating their health. As an advocate for rare disease, not only will you take part in pushing for stronger policies, but you’ll also work directly with patients to ensure that they are taken care of and feel appreciated. Having a rare disease can be highly stressful for patients and their families, but, thankfully, a patient advocate can relieve them of some of stresses and turmoil that comes with managing their health.

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