For many people with alpha-1 antitrypsin deficiency, especially those with advanced lung disease or requiring long-term oxygen therapy, travel planning often involves significantly more effort than for others. Those traveling with oxygen must take care of medical certificates, arrangements for supplies at their destination, airline and train company regulations, and insurance matters well in advance. Differing regulations across European countries further complicate the planning process.

This is precisely where the new „Travel with Oxygen toolkit the European Federation of Allergy and Airways Diseases Patients' Associations (EFA) Although the project was originally developed for COPD patients, much of the information is also of great benefit to people with alpha-1 antitrypsin deficiency who require oxygen therapy.

This free online service brings together a wealth of practical information in one place and helps with travel preparation. This includes, among other things:

• a detailed checklist for travel planning,
• Email templates that can be used to contact airlines, oxygen suppliers, or hotels,
• Frequently asked questions about traveling with oxygen,
• Information on portable oxygen concentrators (POCs),
• Information on insurance, medical documents and the European Health Insurance Card (EHIC),
• as well as a network of national contact points in several European countries who can provide support with country-specific questions.

A particularly helpful tip from the EFA team: Start planning your trip four to eight weeks before departure. This leaves sufficient time to obtain medical certificates, coordinate oxygen requirements with the treating pulmonologist, check the airline's requirements, and organize supplies at the destination. Airlines, in particular, differ considerably in which portable oxygen concentrators are permitted and what documentation or battery reserves are required.

You can find the EFA toolkit here. here:

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Disability ID card information brochure

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or under https://alpha1-deutschland.org/flyer

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Travel for All
– a nationally recognized labeling system in Germany.

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„"Tourist tax and more"“

Unfortunately, there is no nationwide overview of how tourism taxes (e.g., visitor's tax, guest tax, overnight tax/bed tax/tourist contribution) are regulated for severely disabled people in Germany, as there is no uniform national regulation. Each municipality or city enacts its own bylaws.

Basic information: What are tourism taxes?

In Germany, many Cities, towns and spas have local taxes, which concern tourist activities and stays. The most common forms are:

• Tourist tax / visitor's tax / tourism levy (daily rate) – usually per person/day to finance tourist infrastructure and services.
• Accommodation tax / lodging tax / city tax / cultural promotion tax – often as Percentage of the accommodation price, e.g. in large cities.
• Tourism tax – is not necessarily collected directly from the guest, but usually from businesses that profit from tourism (e.g. holiday apartments).

Severely disabled – General situation

1. Tourist tax / visitor's tax (per day/person)

In many municipalities, the statutes stipulate that Severely disabled persons may be fully or partially exempt or have to pay a reduced rate.. The specific details depend on the municipality:

• Exemption or reduction for certain disability symbols
  Often, the following applies: People with a degree of disability (GdB) of 80 or above, or with the markers "B" (accompaniment), "aG" (exceptional walking disability), "Bl" (blindness), "H" (helpless) are partially exempt or pay less.
• Accompanying persons are usually also exempt if the disability ID card bears the symbol "B".
• In some towns, for example, the tourist tax is completely waived for the person affected and their accompanying person if their disability rating is 100.

But: There are also places (e.g. on Rügen) that have changed their statutes so that even people with disabilities have to pay the normal tourist tax.

2. Accommodation tax / lodging tax (city tax)

This fee is levied by some cities (e.g. Hamburg, Berlin, Münster, Magdeburg, Mannheim) as a percentage of the accommodation price.
A nationwide exemption for severely disabled persons is much less frequently explicitly provided for, because this tax often does not take into account "tourist stays" but overnight stays in general – thus also including business travelers.
However, in some smaller municipalities there are exceptions for severely disabled people with certain distinguishing marks and their accompanying persons – if this is regulated in the statutes (e.g. severely disabled ≥ 80 % and accompanying person).

3. Tourism tax for businesses

This levy is primarily aimed at businesses that profit from tourism and is a business tax. Therefore, individuals – including tourists, even those with severe disabilities – are generally not eligible for personal exemptions, as the levy is paid by the business, not by the guest.

Important legal and practical information

• There is no uniform regulation across Germany: Each municipality can define its own exceptions for severely disabled people.
• Proof required: The exemption/reduction of the tourist tax is usually only recognized if the severely disabled person's ID card (especially with the codes "B", "aG", "Bl", "H") is presented at check-in or registration.
• Accompanying persons: An accompanying person is only exempt if this is expressly stated in the statutes and noted in the identification card (e.g., symbol B).

Recommendation for travelers

Since the regulations vary so much, it's worth checking:

1. Before starting your trip, check the tourist tax/tourism levy regulations of the respective municipality online.
2. Please have your disability ID card ready when booking or arriving (especially if it has the code "B" for accompaniment).
3. If you have any questions, please contact the accommodation provider or the local tourist information office directly.

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We are pleased to announce that we now have 12 confirmations and are happy to provide the final details for the hike.

We'll meet on Sunday, August 15, 2021, at 1:30 p.m. The meeting point is at the Leonardo Royal Hotel Stadtwald, located at Dürener Str. 287 in 50935 Cologne. The hotel has an entrance with parking spaces on Dürener Str. The meeting point is at the rear of the hotel, directly by the small lake.

We offer two hikes:

1. 1.3 h the small loop around the Decksteiner Weiher
2. 45 minutes, short circular hike through the city forest

Anyone who doesn't want to hike but would still like to join can simply come along at 2:30 pm. Alpha1 table is from 2 PM reserved.

We are also happy to offer a longer hike of 2 hours or a shorter walk of 15 minutes, should there be interest. We can discuss this further on site.

After the walk, we'll meet for a relaxing coffee in the hotel's beer garden. The event will end around 5:00 PM..

We kindly ask those who wish to register at short notice to respond as soon as possible.

We are looking forward to seeing you again after a long time and are also happy to welcome some new faces who have only recently joined the group.

See you on August 15, 2021.

Stay healthy,

Barbara and Bernd

PS The incidence rate in Cologne is approaching 50; should this lead to disruptions or the cancellation of the event, we will inform you in due time.

PS1 Parking fees will be covered

Bernd Dobbert and Barbara Pixa

Group Leader Cologne

Tel: 0221-231068 and 0202-2534801

Mail: SHG.Koeln@alpha1-deutschland.org

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Translation of the term “alpha-1 antitrypsin deficiency” into 25 languages. So you can be easily understood on vacation.

Author

Alpha1 Germany eV.

Download the table for on-the-go use:

Explanation of terms

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A great deal of freedom regained, thanks to the e-bike…

Author

Heike and Helmut

Hello fellow Alphas, as most of you already know from previous letters to the editor, Helmut and I have been living in the beautiful North Sea coastal town of Carolinensiel for over two and a half years. So what do you do when you need that healthy sea air to breathe but don't have the stamina for walks? You get an e-bike. That's exactly what we did, and we bought two in May 2016. With them, we explored part of our new East Frisian home and saw things we would never have seen by car. Last year, we cycled about 3,000 km, with day trips of up to 60 km being no problem at all. As it happened, our paths crossed with those of the Niethammer family by chance on market day at our museum harbor. We had a lot to catch up on, as we had known each other since the Alpha meeting in Dortmund in 2013. At some point, we got onto the topic of e-bikes, and I was sure some of you would find it interesting to hear about my experience with an Alpha-1 COPD Gold IV emphysema patient. Since we live on the coast, where there's always a light to strong breeze, as I've already mentioned, it wasn't possible for me to get around on a regular bike, so an e-bike was the only option. Even the first ride had a positive effect; it was a completely new feeling, how easy it is to navigate the paths along the dikes. Helmut wanted to go home, but I couldn't get enough, so it turned into a test ride of well over 40 km. I finally felt free again, had no difficulties, and I still don't, even though the rides are sometimes significantly slowed down by headwinds. My e-bike is my only way to do something on my own, since I haven't driven a car in a long time due to fear of panic attacks, which aren't good for me, and I can't walk very far. Personally, I wouldn't want to be without my bike anymore, because I've regained a great deal of freedom that I could only dream of as a pedestrian. It's simply wonderful and, above all, fun to enjoy nature here on the coast, or even inland, and to see things that bring back childhood memories. That's why I want to encourage you to give it a try, because especially with our condition, physical activity that's also enjoyable is important.

Best regards, Heike and Helmut

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