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:
We are pleased to inform you that 3 new anaesthesia guidelines are online:
We'd like to thank all authors and reviewers for their participation.
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
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!
Moreover, the OrphanAnesthesia Team wants to wish HAPPY EASTER to you all!
We are pleased to announce that our anaesthesia recommendations for Congenital Central Hypoventilation Syndrome (Ondine's curse) has just been published online.
We are pleased to inform you that our anaesthesia recommendations for patients suffering from Charcot-Marie-Tooth disease have just been published online.
We are very glad to announce that 4 Spanish translations of our anaesthesia recommendations have already been published online:
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.
We are pleased to announce that another guideline has just been published online:
Malignant Hyperthermia (MH) is now available at http://www.orphananesthesia.eu/en/rare-diseases/published-guidelines/cat_view/61-rare-diseases/60-published-guidelines/99-malignant-hyperthermia.html.
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.
We are pleased to announce that yet another 3 anesthesia guidelines have just been published online: There is a guideline 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.
Right now, there are two more guidelines available. We just published anesthesia recommendations for patients suffering from alpha-mannosidosis and from Marfan syndrome.
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.
"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.
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.
OrphanAnesthesia wünscht allen frohe Weihnachten und ein gesundes neues Jahr.
2011 können wir auf auf ein erfolgreiches Jahr zurück blicken. OrphanAnesthesia ist online gegangen. Wir können stolz die ersten 10 Handlungsempfehlungen zur Anästhesie bei Patienten mit seltenen Erkrankungen präsentieren, wohl wissend das noch viel Arbeit vor uns liegt. In diesen Zusammenhang sei darauf verwiesen, dass kürzlich die Handlungsempfehlungen zur Anästhesie bei Patienten mit Charge-, Aperts- und Russel-Silver-Syndrome publiziert wurden.
Wir möchten uns noch einmal sehr herzlich bei allen bedanken, die uns unterstützt haben. Wir hoffen natürlich auf weitere Unterstützung in der Zukunft. Es gibt viel zu tun, wenn man bedenkt wie viele tausende seltene Erkrankungen noch vor uns liegen...
Die Bedeutung seltener Erkrankungen ist erkannt. Dies wird in der Oktoberausgabe des Europen Journal of Anaesthesiology verdeutlicht. Dort ist dem Projekt OrphanAnesthesia ein Editorial gewidmet worden.
Fast gleichzeitig hat das Editorial Board des European Journal of Anaesthesiology beschlossen eine Sektion: "Anaesthesia for Orphan Diseases" ins Leben zu rufen, um eine Plattform für die Publikation von Fallbeispielen und Fallserien im Zusammenhang mit der anästhesiologischen Betreuung von Patienten mit seltenen Erkrankungen zu schaffen.
Es soll damit zu einer Verbesserung der Patientensicherheit beigetragen werden. Diese hängt gerade bei Patienten mit seltenen Erkrankungen von Wissen und Wissenbeschaffung ab. Die genannten Projekte werden in Zukunft ihren Beitrag dazu leisten.
Die Veröffentlichungen zum Thema finden Sie an folgenden Stellen:
In der deutschen Version der HE zur Anästhesie bei Patienten mit Muskeldystrophie Duchenne fand sich ein Schreibfehler.
Im Abschnitt "Durchführung der Anästhesie" muss es heißen: "Eine prophylaktische postoperative Beatmung ist NICHT notwendig, wenn eine konsequente Relaxometrie durchgeführt wurde."
Die HE ist aktualisiert worden.