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Navigating the Healthcare System with IIH

IIH Patient Nicole Rodriguez shares her valuable insights on navigating through the U.S. healthcare system while living with a rare condition

On April 25th, 2024 we held a chat session hosting Nicole Rodriguez to discuss using her career as a user experience designer to navigate through the US healthcare system with idiopathic intracranial hypertension (IIH).

During this one-hour webinar we discussed how important it is to stay organized. She shared her template on how to keep yourself on track and keep information readily available to medical providers.

After a year of seeing 10 specialists and missing 5 months of work to receive a diagnosis of IIH, and discovering she has venous sinus stenosis, her insurance denied approval for the placement of a stent

She learned that if you have a choice, find an insurance provider who is familiar with the complexity of rare diseases. If you have venous sinus stenosis and are a candidate for a stent, check to see if your health insurance will cover venous stent placement by providing proper procedure codes to help expedite the process. 

Do not be afraid to shop around for the right insurance provider. In the United States we have private and public options. You may also qualify for medicaid or marketplace options. Use your team to help make those calls and ask the right questions. If you have insurance, open enrollment is a great time to make changes to your current plan. 

Be an advocate for yourself by creating a team and educating yourself about this rare disease so you are not lost in the system.

We are grateful to host Nicole and thank everyone for their attendance and participation.

If you would like to watch this session, click here.

Mark your calendars for our next free live webinar on June 24th at 9:30 am EST, we plan on discussing GLP1’s and its impact on patients with obesity. 

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May 8, 2024
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Patient stories

“I know everyone says to trust your gut, so I’ll say trust your headache. Your pain is real, and ‘borderline-ish’ does not serve anyone.”
“Knowing your diagnosis and following the latest science and research is crucial in a world where you will encounter medical professionals who have never seen an IIH case.”

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June 24 at 9:30 am ET