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

 
 

News

20 new translations in Czech

Thanks to our dedicated Czech colleagues, you find 20 more translations into Czech on our website!

60 recommendations in Czech online!

The joint efforts of Czech anaesthesiologists have made it possible that we now can offer 60 of our recommendations in Czech. Thanks to the dedicated translators!

Portuguese translation: Tetralogia de Fallot

We are happy to offer another Portuguese translation: Tetralogia de Fallot.

New translations into German: Brugada-Syndrom + Osteogenesis imperfecta

We are happy to offer here new translations into German of the recommendations on Brugada-Syndrom and Osteogenesis Imperfecta

New recommendation: Dubowitz syndrome

We are happy to offer now a recommendation on Dubowitz syndrome to you.

Czech translations online!

Due to the joint efforts of several Czech colleagues, we are able to offer now 20 recommendations in Czech. We are very happy with this and say thank you very much for this valuable contribution!

Kennedy disease - new recommendation, also in French

Please find here a new recommendation, on Kennedy disease. Thanks to the dedicated French patient organisation, we can offer this also in French.

New recommendation on Insulinoma

Find here the recommendation on Insulinoma. Many thanks to the author, and the reviewers!

New translations into Italian: Moyamoya, Sindrome di Kabuki, Sindrome di Wolf-Hirschhorn

Please find here new translations into Italian, thanks to the Italian colleagues:

Kabuki syndrome - Sindrome di Kabuki

Wolf-Hirschhorn syndrome - Sindrome di Wolf-Hirschhorn

Moyamoya disease - Moyamoya

2 new translations into German: Ehlers-Danlos syndrome, Fabry disease

Please find here German translations of Ehlers-Danlos syndrome and of Fabry disease. Thanks to the dedicated translators!

Rare Disease Day on 29. February

The coming saturday is Rare Disease Day. Since 2009, the last day of February is celebrated as Rare Disease Day. Find more information on www.rarediseaseday.org. We invite you to spread information on this, and make people more aware.

And we thank you that you make it possible for us to present more and more recommendations on rare diseases.

Novedades - News: Spanish website online!

We have succeded in creating a Spanish version of OrphanAnesthesia - you find the button with the German and the English one up on the left side. We are very happy that this was made possible by the German Society of Anaesthesiology and Intensive Care Medicine and by our Spanish contributors, and we hope that this makes the recommendations still more accessible all over the world.

Have a peaceful Christmas time, and a happy New Year!

Thanks to all the supporters of the project OrphanAnesthesia in the last years, we are now offering anaesthesiolgical recommendations on more than 180 rare diseases, and in up to 4 languages. And the project grows, making patients with rare diseases all over the world a little bit safer. We are proud of this achievement that so many people in so many countries have been accomplishing.

We wish all of you a peaceful Christmas time, and a happy New Year!

The OrphanAnesthesia team

 

 

New recommendation: Dyskeratosis congenita

We are happy to offer here a new recommendation: Dyskeratosis congenita.

New recommendation: Sjögren-Larsson syndrome

Wer are happy to offer a recommendation on Sjögren-Larsson syndrome now.

New translation into Spanish: Trombocitopenia Immune

Please find here a new translation intos Spanish of Immune thrombocytopenia: Trombocitopenia Immune.

New recommendation: Hamamy syndrome

We are happy to offer a new recommendation to you on Hamamy syndrome. Thank you to authors and reviewers!

New recommendation: Fabry disease

Please find here the recommendation on Fabry disease.

New: recommendation on Multiple myeloma

Please find here a new recommendation on: Multiple myeloma.

New German translations of CADASIL and on Mucolipidosis type 2 and 3

We are happy to present here a German translation of CADASIL and a German translation of Mucolipidosis type 2 and 3.

New recommendation: PURA syndrome

Please find here a new recommendation on PURA syndrome. We say thank you to the authors and reviewers!

New recommendation on Giant axonal neuropathy

We are happy to present a new recommendation on Giant axonal neuropathy. Thanks to the author and the reviewers!

French translation online!

Find here the first French translation on the OrphanAnesthesia website: Paralysie Spastique Familiale - Hereditary spastic paraplegia.

Our thanks to the dedicated translator.

And welcome to all who are ready to translate more - just contact us.

New: recommendation on Pierre Robin sequence

We are happy to present a new recommendation on Pierre Robin sequence.

New translations on Apert syndrome & on MYH9 related disease

Please find here the translation of Apert syndrome into Portuguese: Sindrome de Apert,

and here the translation of MYH9 related disease into Italian: Malattia correlata MYH9.

Thanks to the dedicated translators!

Update on Joubert syndrome

Please find here the updated recommendation on Joubert syndrome, both in English and German.

Translations into German: Liddle's disease - Glycogen storage disease type I

Find here the new translations of Liddle's disease (Liddle-Syndrom) and Glycogen storage disease type I (Glykogenspeicherkrankheit Typ I) into German.

New translations into Italian and into German

Please find the new translations on Alport syndrome - Sindrome di Alport - into Italian, and on Angelmann syndrome - Angelmann-Syndrom - into German.

New recommendation: Lujan-Fryns syndrome

Please find the new recommendation on Lujan-Fryns syndrome on our website.

New recommendation: Nager's syndrome

Please find the new recommendation on Nager's syndrome online.

Update on Mucolipidosis type 2 and type 3

Please find the update of the recommendation on Mucolipidosis type2 and type 3 online. Thanks to the author and the reviewer!

Portuguese Translation of Rubinstein-Taybi syndrome

Please find the new Portuguese translation of Rubinstein-Taybi syndrome.

Recommendation on Preeclampsia

Please find the new recommendation on Preeclampsia on our website.

Recommendation on Leprosy online

Please find a new recommendation online on Leprosy.

Updates: Myasthenia gravis and Welander distal myopathy

Please find here the updated recommendations on Myasthenia gravis and on Welander distal myopathy. We would like to thank the authors for their ongoing support.

New recommendation online: Hereditary spastic paraplegia

Please find the recommendation on Hereditary spastic paraplegia (Strumpell-Lorrain syndrome) online on this website.

New: recommendation on Xeroderma pigmentosum

Please find a new recommendation on Xeroderma pigmentosum on our website.

New recommendation online: MYH9-related disease

Please find the new recommendation on MYH9-related disease online, as well as the update on CADASIL.Many thanks to the dedicated authors and reviewers!

New recommendation online: Andersen disease

Please find a new recommendation on Andersen disease on our website.

New recommendation on 3MC syndrome - Michels syndrome

Please find the new recommendation online on 3MC syndrome - Michels syndrome.

Update on Angelman syndrome - Italian version

Thanks to the Gruppo di Studio Anestesia e Malattie Rare, SARNePI, Italia, we now have not only the English update, but also the Italian update of Angelman syndrome: Sindrome di Angelman.

Update on Multiminicore disease online

We are happy to present the updated version of the recommendation on Multiminicore disease. Many thanks to the author!

Please note that the Spanish translation is not yet updated, as indicated by the date; we are working on it.

German translation of Mitochondrial disorders

Please find here the German version of Mitochondrial disorders: Mitochondriopathien.

Update on Angelman syndrome online

The recommendation on Angelman syndrome has been updated now.

Please note that the Italian translation is not yet updated. If you know someone who would be ready to do this, please contact us: This email address is being protected from spambots. You need JavaScript enabled to view it.. Thank you!

Update on Alpha-mannosidosis

We now have received an update on the recommendation for Alpha-mannosidosis.

Update on Kasabach-Merritt syndrome

Please find the update on the recommendation for Kasabach-Merritt syndrome.

New recommendation: Kleefstra syndrome

Please find a new recommendation online: Kleefstra syndrome.

2 Translations into German - March 2019

We now can offer translations into German for:

  • Beals syndrome
  • Fucosidosis

And there are more translations to come!

New recommendation on Schwartz-Jampel syndrome

We are happy to publish a new recommendation on:

Schwartz-Jampel syndrome

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

Find 2 more recommendations in Spanish:

Cerebrotendinous xanthomatosis - Xantomatosis cerebrotendinosa
Beals syndrome - Sindrome de Beals

New recommendation on Beals syndrom

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: 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


   
    Contact us:
    info@orphananesthesia.eu
 
   Get here a template for
   Consent publication case report

 

   For other languages of this template,
   contact us via e-mail.

 
 


 

 

 

 


 

 

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