As part of NA-USA’s participation in the RARE-X* collection of data we fall under the Global Gene** umbrella. Global Gene offers Zoom seminars, and the last seminar of the year was on October 16, 2025.

It was titled "RARE Advocacy Exchange: Knowing the Rights for Your RARE Child (and Yourself!)" and can be watched here: https://globalgenes.org/blog/rare-advocacy-exchange-session-8-knowing-your-rare-rights/

Four insurance takeaways from this seminar I found helpful as a family member of XK patients are:

Insurance

If you are denied coverage and you need to make an appeal. 

• Read your insurance policy thoroughly. Be ready to point out specific pages and paragraphs that contradict the denial. Document all calls and requests a care/case manager.
• Read your “physician’s “notes from each patient visit, not just the visit “summary” notes.
• Check the credentials of the physician who is denying your insurance claim. A specialist with expertise and familiarity with your rare disease and symptoms is a must for reviewing your appeal. If the person reviewing your claim is not a relevant specialist, you have grounds to appeal and request the relevant specialist review your claim.
• If you are injured at an airport, always have the airport call for an ambulance if needed. Do not call for an ambulance personally because your insurance company will most probably not cover the expense.

Travel 

When traveling let both the airline and Transportation Security Administration (TSA) know you are coming. They have separate disability accommodation protocols. 

While these insights were US-focused, the principles of thorough documentation, understanding your rights, and advocating effectively apply across healthcare systems worldwide, so this is knowledge that can empower any family navigating rare disease care. 

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*RARE-X works with patient advocacy groups and research institutions worldwide to collect and share high-quality rare disease patient data.

**Global Gene is a global non-profit advocacy group dedicated to supporting individuals and families affected by rare and genetic diseases.