Nicolas Mullier of AIRG France has announced that a book about aHUS has been published. Nicolas tells about the book and the patient organisation that has released it.
Nicolas with Dr Véronique Fremeaux-Bacchi
“Great news!!! The AIRG booklet on atypical Haemolytic and Ureamic Syndrome (aHuS) has finally arrived!! We’ve been waiting for it for so many years.
This first booklet will be, I am sure, very much appreciated by all and thus becomes the first french language medical book on disease for patients, doctors and researchers. It is fully funded by the AIRg France and was possible thanks to your donations and accessions and to (www.talents-partage.org).
The drafting of this book was possible thanks to the collaboration of the best French specialists on the subject. I would like to take this opportunity to thank them very warmly, especially Professor Chantal Loirat and Dr. Véronique Frémeaux-Bacchi without whom we would not be here today. The same is true for Dr. Micheline Levy who coordinated the writing of the booklet. I had the opportunity to accompany him in the reading of some chapters, and I can assure you that the task was difficult.
French expertise is no longer to be demonstrated. It’s a fact! All associations related to this disease and throughout the world know the French Group on SHUa and the relevance of their work and publications. I recently realised it on a visit from our American and British friends to the laboratory of Dr Veronique Fremeaux-Bacchi HEGP Paris. For more about that visit click here
This is also an opportunity for me to announce the organization of the next aHUS Patien Day for information on the diseaes. We now need to schedule it (probably early 2019) and everything remains to be done. I would probably call you via the organization. The Research, the latest advances and this booklet allow the 3th information meeting to be considered with consolidated and updated data. There’s been so much progress in a few years.
In the meantime, the next dates are:
– September 24, global awareness day . The theme this year is the honor of the one who supports you in your daily fight. Send your photo and message to Jeff (USA) who will perform a video that will be broadcast that day around the world. Find all information on our facebook page https://www.facebook.com/groups/SHUaFrance/permalink/1969304733107983/
One Word: make a noise and be many to send our messages (even in French).
– on 9 and 10 November 2018, the meeting of the aHUS alliance which brings together all the world associations for aHUS will be held in the Netherlands at a meeting for patients organized by Dutch teams. I would be there and we will not fail to make you a report.
With the release of this booklet, I have an emotional thought for those who have been fighting for years against this disease and living with it. I cannot finish without thinking fondly about Marie who lost the fight against this wicked disease but who, from her white paradise, watches over all of us.
So that we can’t be alone with this disease.
Alone we are rare, together we are strong.
About AIRG Booklets:
AIRG France publishes booklets for patients with hereditary kidney disease and their families.
Booklets are designed as aid for patients with hereditary kidney disease and their families.
They are intended to provide medical information on a given disease, genetic information, information on therapeutic progress.
Clearly each booklet cannot give an exhaustive panorama of all symptoms. Manifestations of a disease are not all identical from one family to another and from one person to another in the same family.
Renal diseases have a timeline and have different stages that each will reach to manage according to its context, family history, personal history.
In essence , these booklets want to be a basis for a dialogue between the patient and family and the doctor who makes the diagnosis.
The Booklets are sent free (MAXIMUM 4 ) on simple request accompanied by an a4 format envelope containing your name, name and address, postage fee of 5,00 €.
Airg-France – BP 78-75261 Paris. 06
They will are also be downloadable on the website of the https://www.airg-france.fr/les-livrets
(Note : aHUS BOOKLET IS NOT YET DOWNLOADABLE).)
About AIRG France:
AIRG through Association Law 1901 is recognised as a public utility. It has its 30 th anniversary this year as the Association was created in 1988 under the leadership of Professor Jean-Pierre Grunfeld and Dr. Ginette Albouze, a few patients, their families and doctors who are anxious to establish networks of exchange so that the medical knowledge of one can enrich The experience and experience of others.
It was recognised as public utility in 2007.
AIRG France has four main missions: -�
• Information on genetic kidney diseases and their consequences on the body and life of patients and on organ donation and kidney transplant.
• Help patients and their families by offering them a place of listening, sharing and mutual support
• Support Research to understand the causes of genetic kidney diseases and combat their consequences.
• Promote organ donation
The Association consists of a board of directors, a scientific council consisting of all volunteers and is based on a network of correspondents across France.
The only. Renal Association in France to finance pathology research with nearly € 100,000
More information on https://www.airg-france.fr