We are happy to present here a recommendation on Birt-Hogg-Dubé syndrome.
We are happy to present a new recommendation, on Metachromatic leukodystrophy. Thanks to the authors and reviewers who made this possible!
We are happy to present a new recommendation: tuberous sclerosis complex. Thanks to the dedicated authors!
Today, poeple all over the world mark rare disease day - to draw attention to these "orphans" of medical care. OrphanAnesthesia is one of the efforts to enhance patients' safety, compiling information on peri-operative care with a rare disease.There are many more efforts already to make people more aware of rare diseases and the problems they present. Join in! Find more information on https://www.rarediseaseday.org/.
We are happy to present a new recommendation on our website: Von Hippel-Lindau disease. Thanks to the authors and reviewers who made this possible!
Plese find here a new recommendation, on Glanzmann's Thrombasthenia. Thanks to the author and the reviewers for their support of the project!
We start the New Year with a new recommendation - please find here the recommendation on Nemaline myopathy.
This year, again, was a big challenge for all of us. In spite of these really difficult times, many physicians all over the world supported this project and did their very best to create the recommendations on our website. We now offer 208 recommendations in up to 5 languages, and more are on their way. We want to thank all of you who contributed!
The project team of OrphanAnesthesia wishes a happy and healthy New Year to everybody!
We are happy to present another new recommendation at the end of this year, on Noncompaction cardiomyopathy. With this, we now have 208 recommendations online to enhance safer and better treatment for patients with a rare disease.
We are happy to present you a new recommendation, on Vein of Galen malformation. Thanks to author and reviewers!
We are happy to offer now a recommendatino on Amyotrophic lateral sclerosis on our website. Thanks to the dedicated contributors!
Thanks to our Spanish colleagues, we now can offer a Spanish version of the recommendation on Pompe disease.
Please find here the recommendation on Neuromyotonia. Thanks to the authors and reviewers who add to more than 200 recommendations on rare diseases!
Please find here the recommendation on Bland-White-Garland syndrome.
We now offer recommendations on 202 rare diseases, and are very happy about the ongoing commitment of so many people all over the world. Thank you!
We are happy to present a new recommendation, on Gerstmann-Sträussler-Scheinker syndrome.
With this new one, we now offer 200 recommendations. To the many contributors from all over the world who have achieved this - thank you!!
This project lives by the dedication and effort from all of you who spend your time and energy to make available all information there is on a rare disease, and so contribute hugely to patient safety.
Best regards - your OrphanAnesthesia Team
We are happy to offer now an update on the recommendation for Macrophage activation syndrome on our website.
We are happy to present you the Spanish translation of the recommendation on urea cycle disorders: Trastornos del ciclo de la urea
Thanks to our dedicated Spanish colleagues!
Next Sunday is Rare Disease Day - the last day of February. This day is meant to focus attention on the so called "orphan" diseases which are treated all too often as a negligible quantity. They are not. Join in to the efforts to make people aware of them, and to make treatment safer!
Thanks to the Czech Society of Anaesthesiology and Intensive Care Medicine, we now can offer 176 of our recommendations in Czech on our website.
We are very happy to end the year with a new recommendation, on Systemic mastocytosis, and with our best wishes for you: have a peaceful time in these last days of the year, and a good start into the New Year!
We also want to thank all contributors for their ongoing efforts - with their help, the project did go on in spite of all difficulties in this very special year. The project is going on, slowly, but: going on!
your Project Team OrphanAnesthesia
The recommendation on Alkaptonuria has now been updated - we say thank you to the dedicated authors!
Please note that the Spanish and the Czech version have not yet been updated, too. We are working on this.
We are happy to present here a new recommendation, on Madelung's disease. Our thanks to the authors and reviewers who have made it possible.
We are very happy to inform you that we can offer now 20 more Czech translations of the recommendations here online. Our thanks to the Czech colleagues who made this possible.
We are happy to present this comprehensive recommendation on urea cycle disorders, including recommendations on N-acetylglutamate synthase deficiency
Carbamylphosphate synthetase deficiency
Ornithine Transcarbamylase Deficiency
Ornithine Transcarbamylase Deficiency
Argininosuccinate lyase deficiency
Please find here a new recommendation, on Aromatic L-amino acid decarboxylase deficiency.
Thanks to the dedicated authors and reviewers who made this possible!
We are happy to present 5 more translations into Portuguese:
Thanks to our dedicated Czech colleagues, you find 20 more translations into Czech on our website!
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!
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!
Please find here a new recommendation, on Kennedy disease. Thanks to the dedicated French patient organisation, we can offer this also in French.
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.
Please find here 7 recommendations now also in Spanish:
Cystic fibrosis - Fibrosis quistica
Haemophilia A - Hemofilia A
Hunter syndrome - Síndrome de Hunter
Sickle cell diesease - Enfermedad de celulas falciformes
Systemic sclerosis - Esclerosis sistemica
Tetralogy of Fallot - Tetralogia de Fallot
We say thank you to all the Spanish supporters who made this possible. Gracias!
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.
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
Please find here a new translation intos Spanish of Immune thrombocytopenia: Trombocitopenia Immune.
We are happy to offer a new recommendation to you on Hamamy syndrome. Thank you to authors and reviewers!
Please find here a new recommendation on PURA syndrome. We say thank you to the authors and reviewers!
We are happy to present a new recommendation on Giant axonal neuropathy. Thanks to the author and the reviewers!
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.
Please find the update of the recommendation on Mucolipidosis type2 and type 3 online. Thanks to the author and the reviewer!
Please find the recommendation on Hereditary spastic paraplegia (Strumpell-Lorrain syndrome) online on this website.
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.
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.
The recommendation on Angelman syndrome has been updated now.
We now can offer translations into German for:
And there are more translations to come!
We are happy to present you 2 new recommendations:
Distal arthrogryposis type 3
We are happy to present you now the Spanish Translation of Biliary atresia:
Many thanks to the dedicated translators.
Find 2 more recommendations in Spanish:
Cerebrotendinous xanthomatosis - Xantomatosis cerebrotendinosa
Beals syndrome - Sindrome de Beals
Please find our new recommendation on anaesthesia with Beals syndrome.
New anaesthesia guidelines have been published online for the following rare diseases:
There is a bunch of new anaesthesia guidelines available. The latest ones include:
Thanks to all the useful work of the authors and reviewers our project continues to grow more and more. Up to now, there are 130 anaesthesia guidelines for rare diseases available.
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.
Weitere Informationen unter: Patienteninfoschreiben
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: