How to fly with a rare disease: rights, tips, and a free e-book

For many people with disabilities or rare diseases, flying is still a challenge surrounded by uncertainty: which documents to bring, how to transport medical equipment, what happens to a wheelchair at check-in, and whether any of this is actually protected by law. The good news is that it is — and knowing your rights is the first step toward turning the dream of traveling into a real, safe experience.

That's exactly the purpose of the e-book **Flying with a Rare Disease — A Guide for Courageous Travelers,** written by **Ana Clara Schindler**, a woman living with Spinal Muscular Atrophy (SMA) type II, a wheelchair user who is tracheostomized and dependent on continuous mechanical ventilation. After years of learning the hard way — often through trial, error, and sheer persistence — how to navigate every stage of air travel, Ana Clara gathered everything she learned into a free guide, available at [viajandocomdoencarara.com](https://www.viajandocomdoencarara.com/).

In this article, we cover the main points addressed in the book and explain why it's essential reading for anyone with a disability or rare disease, as well as for family members, travel companions, and professionals working in accessible tourism.

## A guide born from lived experience

Ana Clara was born and raised in São Paulo and, despite the severe physical limitations imposed by SMA, was always a child full of dreams. Her first flight took place in 2009, on a school trip to Brasília. In her early travel experiences, she had to board lying on a stretcher installed across nine seats — and pay for all of them.

Years later, while trying to fulfill her dream of visiting Disney, she decided to question that requirement. What started as a request turned into a process that took more than three years, involving public agencies, Brazil's civil aviation authority (ANAC), and the airline Gol. The outcome was historic: it helped shape **ANAC Resolution No. 280**, which today requires all Brazilian airlines to adopt proper procedures for passengers who need special assistance. In 2015, Ana Clara finally flew to Orlando — and years later she also traveled to Japan on a mission trip.

That journey of resilience and hard-won technical knowledge is what gives the e-book its power: it isn't just a rulebook, but the account of someone who lived through every barrier before overcoming it.

## What ANAC Resolution 280 establishes

One of the central topics in the guide is a clear explanation of the rights guaranteed under ANAC Resolution 280, which governs assistance for passengers with disabilities or reduced mobility. Among the most important points the e-book highlights:

- airlines are required to provide special assistance at every stage of the trip, from check-in through deplaning;
- a passenger who needs special assistance can be asked to provide specific medical documentation (MEDIF or FREMEC), but this cannot be used as grounds for an unjustified denial of boarding;
- in the event of damage, loss, or the wheelchair or other medical equipment being rendered unusable, the passenger has guaranteed rights against the airline.

One lesser-known benefit — which the book explains in detail — is the **discount of at least 80% on the companion's airfare**, when the need for assistance has been documented and approved by the airline. This is a right recognized by ANAC itself and reinforced by recent court rulings, though it still raises questions when travelers try to claim it.

## MEDIF and FREMEC: the documents that authorize boarding

Much of the difficulty reported by travelers with disabilities or rare diseases relates to the documentation airlines require. The e-book devotes an entire chapter to explaining the difference between the two most important forms in this process:

- **MEDIF (Medical Information Form):** functions as a medical certificate confirming the passenger's ability to travel safely. It's typically requested when oxygen or other medical equipment is needed, or when a health condition could pose some risk during the flight.
- **FREMEC (Frequent Traveller's Medical Card):** designed for people who fly often, so they don't need to fill out a new MEDIF for every trip.

Ana Clara explains how to fill out these forms correctly, which medical documents are usually requested (an up-to-date medical report, a signed medical statement, a list of personal-use equipment and supplies) and how to submit everything for airline review within the required timeframe — essential information for avoiding last-minute surprises at the airport.

## Choosing an airline and planning the trip

Even before buying a ticket, the guide recommends looking at criteria that go well beyond price:

- **Customer service:** whether the airline treats people with disabilities with respect, genuine interest, and clear communication;
- **Technical knowledge:** whether staff are actually equipped to properly guide passengers with disabilities through boarding;
- **Direct flights or minimal connections:** boarding and deplaning is, for many people with disabilities, a longer and more demanding process — so direct flights tend to be the safest and most comfortable option;
- **Aircraft configuration:** checking the seat's recline angle and whether a companion will have easy access to the passenger during the flight, since on some aircraft the layout between seats can make assistance harder to provide.

The book also offers practical guidance on transporting medical equipment — required certifications, battery life, and the need to carry backup supplies — along with tips on carry-on and checked baggage, food, and daily care items.

## Special care for wheelchairs

Wheelchairs get special attention in the book, since improper handling can cause damage and undermine a passenger's independence upon arrival. Ana Clara offers guidance on how to decide which wheelchair model to bring on a trip, how to correctly communicate its technical specifications to the airline before check-in, and what precautions to take to reduce the risk of damage.

## Check-in, boarding, and deplaning

The book's final chapters walk the passenger through the airport experience from start to finish: how far in advance to check in, which documents should be kept on hand, the transfer from wheelchair to airplane seat, seat accommodation, and the different accessibility resources that may be available — such as jet bridges, ramps, and so-called ambulifts (lift vehicles used when no jet bridge is available).

## Why this content matters for accessible tourism

Accessible tourism isn't just about ramps and adapted bathrooms at hotels and attractions — it starts much earlier, when planning how to actually get to a destination. Making sure people with disabilities and rare diseases have clear, reliable information about their air travel rights is an essential part of building truly inclusive tourism.

That's why we recommend Ana Clara Schindler's e-book to anyone who:

- has a disability or rare disease and dreams of flying;
- is a family member or travel companion of someone with special needs;
- works professionally in tourism, hospitality, or aviation and wants a better understanding of the rights of passengers with disabilities.

## Download the free e-book

Flying with a Rare Disease — A Guide for Courageous Travelers is available **for free** at [www.viajandocomdoencarara.com](https://www.viajandocomdoencarara.com/). The book has institutional support from INAME (Brazil's National Institute of Spinal Muscular Atrophy) and brings together, in one place, passenger rights, required documentation, guidance on medical equipment and wheelchair care, and the author's personal story.

As she writes in the book's introduction: *people with disabilities and rare diseases have the right to travel, to occupy spaces, and to pursue their goals. With planning, knowledge, support, and persistence, the freedom to come and go can stop being just a right on paper and become a real experience.*

If you dream of flying — or if you're supporting someone who does — this guide is an excellent place to start, and a reminder that the right to come and go belongs to everyone.

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*This article is for informational purposes only and does not replace a review of current legislation or specific medical or legal guidance for your situation. Always check with the airline and with ANAC Resolution No. 280 before traveling.*