a project of the German Society of Anesthesiology and Intensive Care Medicine




New recommendations on Sheldon-Hall syndrome and on Distal arthrogryposis type 3

We are happy to present you 2 new recommendations:

Sheldon-Hall syndrome
Distal arthrogryposis type 3

Biliary atresia - Spanish translation online

We are happy to present you now the Spanish Translation of Biliary atresia:
Atresia Biliar

Many thanks to the dedicated translators.

2 recommendations now also in Spanish - January 2019

Find 2 more recommendations in Spanish:

Cerebrotendinous xanthomatosis - Xantomatosis cerebrotendinosa
Beals syndrome - Sindrome de Beals

New recommendation on Beals syndrome

Please find our new recommendation on anaesthesia with Beals syndrome.

New recommendation online: Fucosidosis

Find our latest recommendation on Fucosidosis online

2 recommendations now also in Spanish, and 2 in German

We now can offer 2 recommendations also in Spanish:

- Tachicardia ventricular (Catecholaminergic polymorphic ventricular tachycardia)
- Penfigoide bulloso (Bullous penfigoide)

And we can offer 2 recommendations now also in German:

- Allgrove Syndrom (Allgrove syndrome)
- Joubert Syndrom (Joubert syndrome)

Thanks to all supporters!

Merry Christmas and a happy New Year!

We wish you all a peaceful Christmas and a happy New Year!
Special thanks to all the contributors who made and make this project grow!

4 New Spanish Translations

Thanks to our Spanish colleagues, we are able to present now 4 new translations:
  • Síndrome de bridas amnióticas (Amniotic band syndrome)
  • Enfermedad de Behcet (Behcet's disease)
  • Dermatomiositis (Dermatomyositis)
  • Síndrome de Kartagener (Kartagener syndrome)

A new recommendation online

We now have a new recommendation online on Scimitar syndrome.

New Spanish Translations

We are happy to present 3 recommendations in Spanish now:
  • Autism
  • Walker-Warburg syndrome
  • Becker's disease - Myotonia congenity recesiva

Another 3 recommendations in Spanish - November 2018

Thanks to Dr. Margarita Bilbao Liseca, Juan C. Catalá-Bauset, and Dr. Carlos Errando, we now have another 3 recommendations in Spanish on our website:

  • Argininosuccinate lyase deficiency -  deficiencia de Argininosuccinatoliasa
  • Arthrogryposis multiplex congenita - Artrogriposis múltiple congénita
  • De Barsy syndrome - sindrome de De Barsy

3 recommendations now also in Spanish - October 2018

We are happy to present 3 recommendations in Spanish translation now:

Apert syndrome - sindrome de Apert
Arrhythmogenic right ventricular dysplasia - Displasia arritmogenica
Allgrove syndrome - sindrome de Allgrove

Spanish recommendation online - Alport syndrome

Thanks to our Spanish colleagues, we can offer you now the recommendation on Alport syndrome in Spanish

New recommendations online - September 2018

We are glad to present you 3 new recommendations for the following diseases:
  • Freeman-Burian syndrome
  • Rubinstein-Taybi syndrome
  • Walker-Warburg syndrome

New anaesthesia recommendations online - August 2018

New anaesthesia guidelines are available now online for the following diseases:

Allgrove syndrome
Shwachman-Diamond syndrome

New guidelines December 2017 and Happy Holidays!

There are some new anaesthesia guidelines available for the following rare diseases: 

  • de Barsy syndrome
  • Niemann Pick type C
  • Behcet’s disease
  • Congenital diaphragmatic hernia
  • Kartagener syndrome
  • Gaucher syndrome
  • Systemic onset juvenile idiopathic arthritis
  • McArdle disease
The OrphanAnesthesia team would like to wish everyone Happy Holidays and a successful new year. Moreover, we want to thank everyone involved in the project OrphanAnesthesia for their kind support. 

New anaesthesia guidelines available online - August 2017

 New anaesthesia guidelines have been published online for the following rare diseases:

  • McCune Albright syndrome
  • Klippel-Trénaunay syndrome
  • Cerebrotendinous xanthomatosis
  • Erdheim-Chester disease
  • campomelic dysplasia
  • Larsen syndrome
  • Huntingtons' disease
  • trisomy 18
  • biliary artresia

Patientenbefragung Patientensicherheitskarte

Und wie geht es Ihnen?

Die bisherigen Schwerpunkte von OrphanAnesthesia liegen in der Erstellung von Handlungsempfehlungen „durch Ärzte für Ärzte“. Aber wie ergeht es Patienten und deren Angehörigen bei Narkosen? Wir glauben, dass wir die Versorgung bei seltenen Erkrankungen nochmals wesentlich verbessern können, wenn wir mehr über Ihre persönlichen Erfahrungen lernen.
Wir haben unter der Adresse:  https://www.soscisurvey.de/patientsafetycard-dgai eine Befragung von ca. 5-10 Minuten Dauer vorbereitet, die hierzu Klarheit schaffen wird. Dabei richtet sich der Fragebogen auch an Betroffene, die bislang keine Narkose erhalten mussten.
Wir danken bereits jetzt für Ihre Teilnahme an unserer Befragung und freuen uns über Ihre Kritik und Anregungen. Bitte kontaktieren Sie uns unter: This email address is being protected from spambots. You need JavaScript enabled to view it..

Weitere Informationen unter: Patienteninfoschreiben

NEW: OrphanAnesthesia APP online

We would like to inform you that our new OrphanAnesthesia App is online now. The app can be accessed at: http://app.orphananesthesia.eu/. We would like to thank Draeger for their kind support. 

The free-of-charge mobile application is available for iOS, Android and Windows. Our anaesthesia recommendations for rare diseases are therefore even easier accessible and easier to handle for physicians worldwide. 

New: Patient Safety Card for rare diseases

Starting from April 2016, we offer a new "patient safety card" for all hospitals, patients and support groups dealing with rare diseases. 
Patients or doctors can fill-in the specific name of the rare disease. 

The card is made to alert the anesthesiologist to problems that might occured during anesthesia of a patient with a rare disease. The card should be given to the anesthesiologist before anesthesia. It should be carried by the holder in case of emergency surgery. 

The anesthesiologist will be able to get informed of our OrphanAnesthesia recommendations before anesthesia. 

The patient safety card is editable and ready-to print. It can be downloaded at: 

icon Patient Safety Card

New recommendations - March 2016

There are some new anaesthesia recommendations for rare diseases available: 

  • Pantothenate kinase-associated neurodegeneration 
  • Bronchopulmonary dysplasia 
  • Pompe disease
  • 22q11.2 deletion syndrome 
  • Proteus syndrome

New guidelines for rare diseases - November 2015

We are pleased to inform you that some new anaesthesia guidelines have been published online: 

  • Paroxysmal nocturnal haemogloburina
  • Treacher Collins syndrome
  • Sturge-Weber syndrome
  • Stüve-Wiedermann syndrome
  • Tracheal agenesis
  • Familial Dysautonomia

Article in Pediatric Anesthesia / Issue October 2015

An article promoting OrphanAnesthesia has just been published in Pediatric Anesthesia (Pediatric Anesthesia 25, 2015, 967). Please find the article attached.

 icon PAN_Orphananesthesia_2015

Orphan anesthesia: an initiative of the scientific working group of pediatric anesthesia of the German society of anesthesiology

New guidelines for rare diseases

We are glad to inform you that 3 new guidelines have just been added to our website: 

Here you will find a list of all guidelines that have been published so far. The OrphanAnesthesia team would like to thank all participators for their efforts. 
Please do not hesitate to contact us if you would like to submit a guideline, participate as reviewer or just suggest a rare disease which might be interesting for OrphanAnesthesia. Thank you. 

Support our fundraising activities

Help us improve the safety of patients suffering from rare diseases!

Our target is the publication of anaesthesia recommendations for patients suffering from rare diseases - with the aim of improving the safety of patients. 
When it comes to the management of rare diseases, there are only sparse evidence-based facts, and even less knowledge in the anaesthetic outcome. We would like to merge this knowledge, based on scientific publications and proven experience of specialists, and make it available for physicians worldwide free-of-charge. 

This scientific project needs to be promoted and supported in order to attract a larger number of readers and participants worldwide. The increase of patients' safety would thus be ensured.

Click here to make a donation: DONATE NOW (you will be forwarded to our fundraising campaign directly). Thank you very much in advance. 

There are some new OrphanAnesthesia guidelines online

We'd like to inform you that there are some new OrphanAnesthesia guidelines online! Further information can be found at: 

We'd like to take the chance to thank all authors and reviewers once again for their kind participation in our project.

If you are interested in participating as author/reviewer, please just drop us an e-mail at info [at] orphananesthesia.eu. We will get back to you directly. 

New guidelines online - February 2015

We are pleased to inform you that 3 new anaesthesia guidelines are online: 

-Noonan syndrome
-Smith-McCort dysplasia
-Antiphospholipid syndrome

We'd like to thank all authors and reviewers for their participation. 

New OrphanAnesthesia guidelines

Please note that there are another two new guidelines for the anaesthesiological management of rare diseases online: 

Crouzon syndrome
Goldenhar syndrome

New guidelines October 2014

Please note that we have just published the following anaesthesia guidelines: 

-Neurofibromatis Typ 2
-Von Willebrand disease
-VACTERL association
-Brugada syndrome


Please vote for our project

„Was uns berührt“ (en: "What touches us") – online project voting campaign

Please vote for OrphanAnesthesia!
The campaign “Was uns beruehrt” was brought to life by B.Braun Melsungen AG. Outstanding medical projects will be rewarded. For more information please click here (German only). Several organisations have already submitted their projects. All projects will be rated by an academic jury and by online voting. OrphanAnesthesia, as an important step towards the increase of patients' safety, was also chosen to be among the campaign projects. 
Voting will take place from 1st to 15th August 2014 and will be available on the website: http://www.hygiene.bbraun.de/cps/rde/xchg/om-hygiene-de-de/hs.xsl/8276.html
Please spread this message to your colleagues, contributors and friends and ask them to vote for OrphanAnesthesia. 

Thank you for your support!

Relaunch of our website

We are pleased to announce the relaunch of our improved website with a new design. We improved the readability and visual appeal of our website while keeping true to our branding. A brandnew feature is our responsive web design, which means all OrphanAnesthesia contents will provide an optimal viewing experience - easy reading and navigation across a wide range of devices (mobile phones, desktop monitor computers, tablets etc.) As a result, all articles and guidleines will be easier available - no matter which device you are using. 

Another two guidelines have just been uploaded online. Thanks to the authors and reviewers. 
Mounier-Kuhn syndrome
Moyamoya disease

Should you have any questions regarding our new website, please feel free to contact us.

NEW: Publication in medical journal A&I starting with 5/2014

Starting with issue 5/2014, we will publish the OrphanAnesthesia recommendations as a monthly supplement of the medical journal A&I (Anaesthesiologie & Intensivmedizin). Thus they can be accessed and downloaded online via www.ai-online.info

As being part of the journal, the recommendations will also be quotable. Please find a list of all recommendations published in A&I on: http://www.ai-online.info/aionline/Orphsuppl. The recommendations will be published in alphabetical order. 

Moreover, we are pleased to inform you that our anaesthesia recommendations for sickle cell disease (SCD) have just been completed on http://www.orphananesthesia.eu/en/rare-diseases/published-guidelines/cat_view/61-rare-diseases/60-published-guidelines/104-sickle-cell-disease.html

Call to contributors

Dear Colleagues, 

At the moment we are about to explore different forms of financial facilities for our voluntary project OrphanAnesthesia. We would like to establish some fundraising / crowdfunding facilities. In order to improve and reinforce our publicity for OrphanAnesthesia, we would like to ask all contributors and/or interested readers to send us all relevant information you might have. 

Has there been a treatment case in your hospital which has been successfully managed based on an OrphanAnesthesia recommendation? Can you tell us an example when OrphanAnesthesia has been useful in your clinical practice for the management of a rare disease? 

Of course all data would be used anonymized and after approval. Maybe there would even be the chance of getting in contact with a patient with a rare disease so that we could be able to place a success story on our website and/or use it for PR activities. (of course subject to patients' approval). This campaign is intended to draw the public attention to OrphanAnesthesia. 

Please feel free to get in contact with us! We are thankfully looking forward to receiving any kind of information, e.g. a success story, some clinical background story etc. based on OrphanAnesthesia! 

---> This email address is being protected from spambots. You need JavaScript enabled to view it.

Moreover, the OrphanAnesthesia Team wants to wish HAPPY EASTER to you all! 


Congenital Central Hypoventilation Syndrome guideline available

We are pleased to announce that our anaesthesia recommendations for Congenital Central Hypoventilation Syndrome (Ondine's curse) has just been published online. 

New Spanisch tranlsations March 2014

We are pleased to inform you that yet another two Spanisch translations have been published:

-Hipertermia maligna
-Enfermedad multiminicore

OrphanAnesthesia becomes thus more and more international.

Spanish recommendations online!

We are very glad to announce that 5 Spanish translations of our anaesthesia recommendations have already been published online: 

-Distrofia muscular de Emery-Dreifuss (DMED)
-Central Core Disease
-Distrofia muscular de Duchenne
-Hipertermia maligna

We would like to thank Dr. Carlos Errando for his kind contribution. We consider the Spanish translations very useful to attract even more international readers from Spanish-speaking countries, too. Of course everyone will be welcome to particpate in OrphanAnesthesia as a translator. Please do not hesitate to get in contact with us. 

New guidelines October 2013

Another two guidelines have just been published online: Ehlers-Danlos syndrome and macrophage activation system. We'd like to thank our authors and reviewers once again for their effort. 

3 new recommendations online

We are pleased to announce that yet another 3 anesthesia recommendations have just been published online: There is a recommendation for patients suffering from ROHHAD, another guideline for merosin-deficient congenital muscular dystrophy and the third one for Morquio syndrome.

Moreover, we would like to take the chance to thank all participators again.

New guidelines

Right now, there are two more guidelines available. We just published anesthesia recommendations for patients suffering from alpha-mannosidosis and from Marfan syndrome.

Safe Anaesthesia-Award

The Project OrphanAnesthesia just recently received the "Safe Anaesthesia-Award" granted by the "Stiftung Deutsche Anästhesiologie". The Award was presented at the annual meeting of the German Society of Anaesthesiology and Intensive Care Medicine in Nuremberg end of april. This award is given for outstanding projects or scientific research on the field of patient safety in anaesthesiology.

Furthermore OrphanAnesthesia has made some substantial progress in setting up new structures. So we now welcome Nina Schnabel as a new member of our team. She will support the project coordination starting her work this month. With her help we will hopefully can present another 20 Guidelines by the end of the year.

Happy New Year

"OrphanAnesthesia" wants to wish everybody a successful new year.

"OrphanAnesthesia" is now presenting 15 guidelines and spread out its expertise (regarding authors and reviewers) within Europe and the United states. Nevertheless we still grow not fast enough and had hoped for a bigger number of guidelines.

In the next year we will try hard to find some financial support to consolidate our organisational structures and to expand our activities.

Everybody who is willing to support our project "OrphanAnesthesia" will be welcomed and encouraged to participate.

Happy Birthday

In the coming days OrphanAnesthesia will celebrate its first birthday. This may be the right time to reflect the last year and to name the goals coming up next year.

Actually 13 guidelines (3 have been added within the last month) are published at OrphanAnesthesia homepage. Four of these guidelines are already available in a second language (German) and another 20 are in preparation or under review. The number of registered members increased to more than 100.

Furthermore OrphanAnesthesia is on the way to professionalise and internationalise its structure and processes even more. Therefore we started to set up first cooperation’s, initiated fund raising activities and deliberated on the question of the future management structure of OrphanAnesthesia.

In the coming year our most important goal is still to markedly increase the number of the published guidelines. But nevertheless in second - but not less important - line we hope to acquire some effective financial support and to establish international cooperation’s in order to let OrphanAnesthesia grow and bloom.

While saying thank you again to everybody who participates in OrphanAnesthesia we will motivate and encourage everybody to get involved in the project OrphanAnesthesia as an author, a reviewer or translator.

Happy holidays

The Project Team "OrphanAnesthesia" wants to wish everybody happy holidays and a successful new year.

Looking back on 2011, we succesfully set up the internet platform for the project "Orphananesthesia". Although there is still a lot work to do, We are proud to present the first 10 guidelines for anesthesia in patients with rare diseases. At this point we would like to mention that we just recently published Guidelines for anesthesia in patients with CHARGE syndrome, Apert syndrome and Russel-Silver syndrome.

We want to say "Thank you" to everyybody who participated in the project OrphanAnesthesia. We hope for your further support in the future. There is still plenty of work to do given the fact that there are several thousand rare diseases...


The importance of rare diseases is becoming evident. In the october issue of the Europen Journal of Anaesthesiology an Editorial adressed the impact of the topic and introduced the project OrphanAnesthesia. 

At the same time the Editorial Board of the European Journal of Anaesthesiology initiated a section: "Anaesthesia for Orphan Diseases". This will be a platform for publishing case reports or case series regarding anaesthesia for patients with rare diseases.

The aim of these project is to improve patients safety. Especially in cases of rare diseases this safety is depending on information, but even more on provision of information. These projects will in future contribute to this ambitious aim.

The publications regarding the topic you will find here:


Editorial OrphanAnesthesia

Anaesthesia for Orphan Diseases

Minor mistake

The German version of the anesthesia recommendation for patients suffering from Duchenne muscular dystrophy contained a minor mistake.

This mistake is now revised.

EUREKA – OrphanAnesthesia goes public.

The first 6 guidelines are now online. At this point OrphanAnesthesia wants to appreciate everybody’s help with this groundbreaking project.

  • Submit a recommendation!
  • Suggest a reviewer or author!
  • Call us rare diseases!
  • Send us interesting material!
  • Support our fundraising campaign!

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