birdshot horus

Association law 1901
for a cure the disease of Birdshot
French society dedicated to the birdshot disease

September 3, 2019, genetic research on the birdshot disease is about to give its first results 


VERY IMPORTANT: INFO HORUS BIRDSHOT -
September 3, 2019, genetic research on the birdshot disease is about to give its first results -
At the end of 2018, I announced that we had concluded agreements with an American laboratory and that all this required several phases:


1 / repatriate the 500 blood samples from Reims to Paris
2 / transfer to a particular storage tank
3 / Agree on the research protocol with the labporatoire / Transfer the samples to the United States
4 / Sequencing of these 500 samples
5 / Analyze the results of this sequencing, which is the longest and most difficult process.


I exchanged yesterday with Professor Brézin on this subject, and I am happy to confirm that the 500 samples have been sequenced, and that we now begin the analysis and conclusions.
This research should provide us with insights into future treatments, at least hopefully reasonably. However, you know that the disease does not have only genetic factors (only 95% of the patients are HLA-A29 +) but this must logically make things progress considerably.
I will keep you informed of future essential information on the subject.
Sincerely,


Sylvain MIGNON
Pdt HB.


April 18 2019 - about research

Update on the progress of research on birdshot 17 04 2019 -
 
I was yesterday with Prof. Brézin at AP-HP Cochin.
The news that I received for my personal case is rather positive, but we have also dealt with different topics concerning our illness, the actions of the association and the AP-HP:
1 / Concerning the generic research that we launched the process at the end of 2018. We are currently finalizing the delivery of blood and DNA samples, with a concern for retention tank quality. We will therefore have to buy new holding tanks in order to transport them safely. This is a real problem that will have to be resolved quickly, with the support of everyone.
A second phase, which is purely administrative, is currently being validated: the property and protocol agreements between the AP-HP, the University of Paris Descartes and the American laboratory. This is a mandatory phase as part of an international search process.
Thus, as soon as these different "technical" concerns are resolved, we can begin the last part of this long process leading to the analysis of the genome of the patients, and, above all, their interpretation.
So this is a very positive point, even if you will agree with me, we are not going fast enough. Thus, and international research has built a scientific-administrative maze whose pangs are quite depressing!
So we can hopefully have some results in the next few months, and I will keep you personally informed.
2 / Financial action with the AP-HP: With the Brézin pr we have allowed to unlock funding (limited but existing) to pay part of the tanks of retention which I spoke to you above, but also to finalize a position of research assistant in a firm way. So we will have, as well, a direct interlocutor between the various services.
3 / Birdshot and Rheumatoid Spondylitis: A study was done using all AP-HP internists and we can now assume in a reasonable way (I use these terms voluntarily) that there is no relationship between the birdshot and other associated autoimmune diseases, including APS. In fact, there is no difference between the average of the non-sick people of birdshot and the latter with regard to the additional diseases which could be associated, the rates of SPA with the patients of the birdshot and those with the non-patients are the same, on a significant sample of several hundred people.
4 / Following the work done on listing all the patients in the world through the list of hospitals we have set up, I informed Professor Brézin that we had that very few (see not at all) cases in different geographical areas, such as Asia, Africa (apart from South Africa). It seems clear that what we call "the Caucasian type" (or, without seeing any racist clumsiness: the white man's disease) is, obviously, one of the criteria for determining the birdshot.
Of course, we've talked about things and others during this visit, and of course, about something that, at first sight, has nothing to do with that, by which I mean, the fire of the cathedral Our Lady (Indeed the hospital is not far for our foreign friends). And it is precisely on this subject that I wished to say a few words.
This is of course a "historic" disaster, and if it is the "zero" point of calculating distances in France, it is also somewhere, the zero point of our cultural history.
The fact that there is such a national and international mobilization on the fact of rebuilding it as soon as possible is a beautiful thing and reassuring as to the realization of everyone's awareness of the fact that beyond its cultural significance it first represents a clear sign of the human genius of the time.
The hundreds of millions of euros offered in 24h for this reconstruction make me a little afraid, and unfortunately will not go into other sectors that also need it. Also, my dear friends, I urge you not to forget us, and to forget the containes of associations law 1901 which fight as bitter (you can believe me !!) to try to harvest, here and there, the few euros that make that we can painfully survive! We would have to stop the activity completely and leave all actions in place for 9 years now.
We always need you!
I do not want to "race" to find funding and donations, but rely on all of us to finalize the essential research that will help us, help our children and all future generations.
- Thank you for your donations if you can
- Thank you for sharing information on your social networks
- Thank you to put a "I like" a comment on the posts to not have the impression that everything I do goes in the wild and slips on the web ...
- Thank you for your actions if you wish to do
I am at your disposal for any action you wish to carry out.
The "MUR" of the Facebook page is open to all, you can talk to it if you wish, from the moment it relates to the disease of course ...)
I wish us a good cure!
Friendly your
Sylvain 

April 18 2019 - about research

Update on the progress of research on birdshot 17 04 2019 -
 
I was yesterday with Prof. Brézin at AP-HP Cochin.
The news that I received for my personal case is rather positive, but we have also dealt with different topics concerning our illness, the actions of the association and the AP-HP:
1 / Concerning the generic research that we launched the process at the end of 2018. We are currently finalizing the delivery of blood and DNA samples, with a concern for retention tank quality. We will therefore have to buy new holding tanks in order to transport them safely. This is a real problem that will have to be resolved quickly, with the support of everyone.
A second phase, which is purely administrative, is currently being validated: the property and protocol agreements between the AP-HP, the University of Paris Descartes and the American laboratory. This is a mandatory phase as part of an international search process.
Thus, as soon as these different "technical" concerns are resolved, we can begin the last part of this long process leading to the analysis of the genome of the patients, and, above all, their interpretation.
So this is a very positive point, even if you will agree with me, we are not going fast enough. Thus, and international research has built a scientific-administrative maze whose pangs are quite depressing!
So we can hopefully have some results in the next few months, and I will keep you personally informed.
2 / Financial action with the AP-HP: With the Brézin pr we have allowed to unlock funding (limited but existing) to pay part of the tanks of retention which I spoke to you above, but also to finalize a position of research assistant in a firm way. So we will have, as well, a direct interlocutor between the various services.
3 / Birdshot and Rheumatoid Spondylitis: A study was done using all AP-HP internists and we can now assume in a reasonable way (I use these terms voluntarily) that there is no relationship between the birdshot and other associated autoimmune diseases, including APS. In fact, there is no difference between the average of the non-sick people of birdshot and the latter with regard to the additional diseases which could be associated, the rates of SPA with the patients of the birdshot and those with the non-patients are the same, on a significant sample of several hundred people.
4 / Following the work done on listing all the patients in the world through the list of hospitals we have set up, I informed Professor Brézin that we had that very few (see not at all) cases in different geographical areas, such as Asia, Africa (apart from South Africa). It seems clear that what we call "the Caucasian type" (or, without seeing any racist clumsiness: the white man's disease) is, obviously, one of the criteria for determining the birdshot.
Of course, we've talked about things and others during this visit, and of course, about something that, at first sight, has nothing to do with that, by which I mean, the fire of the cathedral Our Lady (Indeed the hospital is not far for our foreign friends). And it is precisely on this subject that I wished to say a few words.
This is of course a "historic" disaster, and if it is the "zero" point of calculating distances in France, it is also somewhere, the zero point of our cultural history.
The fact that there is such a national and international mobilization on the fact of rebuilding it as soon as possible is a beautiful thing and reassuring as to the realization of everyone's awareness of the fact that beyond its cultural significance it first represents a clear sign of the human genius of the time.
The hundreds of millions of euros offered in 24h for this reconstruction make me a little afraid, and unfortunately will not go into other sectors that also need it. Also, my dear friends, I urge you not to forget us, and to forget the containes of associations law 1901 which fight as bitter (you can believe me !!) to try to harvest, here and there, the few euros that make that we can painfully survive! We would have to stop the activity completely and leave all actions in place for 9 years now.
We always need you!
I do not want to "race" to find funding and donations, but rely on all of us to finalize the essential research that will help us, help our children and all future generations.
- Thank you for your donations if you can
- Thank you for sharing information on your social networks
- Thank you to put a "I like" a comment on the posts to not have the impression that everything I do goes in the wild and slips on the web ...
- Thank you for your actions if you wish to do
I am at your disposal for any action you wish to carry out.
The "MUR" of the Facebook page is open to all, you can talk to it if you wish, from the moment it relates to the disease of course ...)
I wish us a good cure!
Friendly your
Sylvain 

April 18 2019 - about research

Update on the progress of research on birdshot 17 04 2019 -
 
I was yesterday with Prof. Brézin at AP-HP Cochin.
The news that I received for my personal case is rather positive, but we have also dealt with different topics concerning our illness, the actions of the association and the AP-HP:
1 / Concerning the generic research that we launched the process at the end of 2018. We are currently finalizing the delivery of blood and DNA samples, with a concern for retention tank quality. We will therefore have to buy new holding tanks in order to transport them safely. This is a real problem that will have to be resolved quickly, with the support of everyone.
A second phase, which is purely administrative, is currently being validated: the property and protocol agreements between the AP-HP, the University of Paris Descartes and the American laboratory. This is a mandatory phase as part of an international search process.
Thus, as soon as these different "technical" concerns are resolved, we can begin the last part of this long process leading to the analysis of the genome of the patients, and, above all, their interpretation.
So this is a very positive point, even if you will agree with me, we are not going fast enough. Thus, and international research has built a scientific-administrative maze whose pangs are quite depressing!
So we can hopefully have some results in the next few months, and I will keep you personally informed.
2 / Financial action with the AP-HP: With the Brézin pr we have allowed to unlock funding (limited but existing) to pay part of the tanks of retention which I spoke to you above, but also to finalize a position of research assistant in a firm way. So we will have, as well, a direct interlocutor between the various services.
3 / Birdshot and Rheumatoid Spondylitis: A study was done using all AP-HP internists and we can now assume in a reasonable way (I use these terms voluntarily) that there is no relationship between the birdshot and other associated autoimmune diseases, including APS. In fact, there is no difference between the average of the non-sick people of birdshot and the latter with regard to the additional diseases which could be associated, the rates of SPA with the patients of the birdshot and those with the non-patients are the same, on a significant sample of several hundred people.
4 / Following the work done on listing all the patients in the world through the list of hospitals we have set up, I informed Professor Brézin that we had that very few (see not at all) cases in different geographical areas, such as Asia, Africa (apart from South Africa). It seems clear that what we call "the Caucasian type" (or, without seeing any racist clumsiness: the white man's disease) is, obviously, one of the criteria for determining the birdshot.
Of course, we've talked about things and others during this visit, and of course, about something that, at first sight, has nothing to do with that, by which I mean, the fire of the cathedral Our Lady (Indeed the hospital is not far for our foreign friends). And it is precisely on this subject that I wished to say a few words.
This is of course a "historic" disaster, and if it is the "zero" point of calculating distances in France, it is also somewhere, the zero point of our cultural history.
The fact that there is such a national and international mobilization on the fact of rebuilding it as soon as possible is a beautiful thing and reassuring as to the realization of everyone's awareness of the fact that beyond its cultural significance it first represents a clear sign of the human genius of the time.
The hundreds of millions of euros offered in 24h for this reconstruction make me a little afraid, and unfortunately will not go into other sectors that also need it. Also, my dear friends, I urge you not to forget us, and to forget the containes of associations law 1901 which fight as bitter (you can believe me !!) to try to harvest, here and there, the few euros that make that we can painfully survive! We would have to stop the activity completely and leave all actions in place for 9 years now.
We always need you!
I do not want to "race" to find funding and donations, but rely on all of us to finalize the essential research that will help us, help our children and all future generations.
- Thank you for your donations if you can
- Thank you for sharing information on your social networks
- Thank you to put a "I like" a comment on the posts to not have the impression that everything I do goes in the wild and slips on the web ...
- Thank you for your actions if you wish to do
I am at your disposal for any action you wish to carry out.
The "MUR" of the Facebook page is open to all, you can talk to it if you wish, from the moment it relates to the disease of course ...)
I wish us a good cure!
Friendly your
Sylvain 

research on the disease of birdshot ahead in 2018 - a big step forward!

HORUS BIRDSHOT - FIRST INFO!


January 16, 2018-




I was yesterday with the Pr Brézin hospital Cochin (Paris, France) and I am pleased to announce that we have negotiated with an American company, 300 sequencing of DNA from sick of birdshot!


It's a big step forward, we worked on it for years, and even if we had already started an embryo for research with 4 genetic tests (each test costs about $ 5,000!), we can now say that the birdshot research will actually start this year.


We had for some time a stock of 300 samples valid for this action, but, not the money to finance it. Present, and current 2018, we can already move on the first sequence.
This is a major step forward that offers us prospects for the coming years.


Because Yes, we should not expect results immediately, it is a study that will last months, or even years, but it will be finally launched this year!
I will keep you abreast of the progress of the things as you go along.


Friendships and health to all.



Sylvain cute
Founding President
Horus birdshot Association
disease of birdshot.

OCTOBER 8, 2018: RESEARCH IN GENETIC FOR BIRDSHOT AHEAD WAS APPROACHING!


Monday, October 8, 2018: yesterday I was, yesterday, with the Pr Monnet in Cochin Hospital and I have confirmation that the first part of the procedures put in place for the sequencing of the genome of 350 patients Birdshot, have started successfully.
The first was to find a lab that could make us this work, it is made formally. The second to repatriate all of our bank with the blood of our samples of the sick of the birdshot,'s now done it. The third phase will begin shortly with, we hope all and all results allowing us to see the future with a little more serenity.


Sylvain cute
Founding President
Horus birdshot Association
disease of birdshot.

February 28, 2019: #raredisease day

IF WE FOUND A CURE HAS THE DISEASE OF BIRDSHOT!
#rarediseaseday

As part of the rare disease day this February 28, 2019, I thank Cfa pastor and his Director, Ms. Valérie Prillieux of we have opened its doors and allowed to present the disease as well as the association more than 300 students in ophthalmology and in Pharmacy.
These presentations were made by students of the University of Reims of the Horus Birdshot 2018-2019 project:
Sarah CALUDEPIERRE, Caroline TAN, Levanik KDHUDOIAN,
Florian GUILLAUME, Emeline PORTAS, Justine KOBIELSKI
and we can all thank them for the outstanding work accomplished by these young people affected by our fate, and determined to help us.
For my part, I was able to answer the many questions posed by these future healthcare professionals.

Friendly,.
Horus Birdshot cute Sylvain

Nos soutiens

Everything what we fund is done completely privately, because although we are an association law 1901 approved, we have no public funding.
We need you, indeed.
Horus birdshot is:
-100 partner hospitals in nearly 25 countries
-130 doctors
-Contacts in more than 50 countries
-More than 2000 people who follow us on social networks
-More than 25000 visits on our website
-Of genetic research on the birdshot since November 2018
-Ophthalmologists, immunologists, researchers, specialists in genetics
-Partners
-Members
-Donors

horus birdshot Association
Facebook: horus birdshot asso

This site is dedicated to the Birdshot - disease type rétinochoroïdopathie orphan blinding.


This web site is dedicated to the birdshot disease. blinding disease.

Welcome all,.

My name is Sylvain, I am 50 years old and I have the Birdshot type retinochoidite.
It's a disease orphan blinding. In 6 years, I have lost 3/4 of my vision...

I am an officer of companies, painter specialized in portraits and high-level sportsman. This disease has been detected to me during a trip to South Africa and I have no certainty about the future of my eyes.

I created this association in order to help our scientists to discover a treatment to treat this disease. Indeed I wouldn't end up blind without thinking that I have tried everything to cure me.

If progress is being made through our action, then I can say that I have not fully served has nothing in this society.

We already have the support of personalities such as Mr. and Mrs. Sarkozy, Mrs Line Renaud, Mr Gilbert Montagné, Ms. Chantal Ladesou.

We have especially accreditation of hospitals taken through the Pr Brézin hospital Cochin, the Professor Cohen, immulologue, as well as the Pr Levinson of UCLA.

This site and this association has also been created to allow people with this orphan disease answers their questions, they could have names has contact addresses for health care, the names of teachers who are members of honour of this association in the best hospitals of France and the world, the best care as well as all the accessories that can improve their lives (glasses, filter glasses, specific hardware...). It is a disease that can eventually be expensive! Because everything is not refunded.

I hope that we will find as well a solution to our ills...

I encourage you to go on facebook (link alongside) to regroup and discuss


Sylvain
Founding president.

HORUS-BIRDSHOT
Association law 1901
declared in the prefecture
Reims - 22/11/2010
approval No.: W513001893

CFA PASTOR 2018

soutenance mars 2018

PASSAGE RADIO 31 JANVIER 2018

https://www.facebook.com/rjrradiojeunesreims/videos/1721903291164348/

ARTICLE DU JOURNAL L'UNION

NEWS DU 23 OCTOBRE 2015

HORUS TV

RETROUVEZ LES VIDEOS HORUS BIRDSHOT

News

PRECOMMANDE DU LIVRET HORUS BIRDSHOT SUR LA MALADIE DU BIRDSHOT DANS LE MONDE -

contact@horus-birdshot.fr

J'attends, avec impatience, le second tirage (essai N°2), du livret sur la maladie dans le monde.

Après avoir bien lu vos remarques et suggestions, il fera 84 pages et sera enrichi de vos témoignages (anonymes bien entendu) ainsi que de divers documents.

Comme vous pouvez le voir, la couverture a également évolué.

Tirages de qualité.

A ce jour nous en sommes à 32 exemplaires en précommade.

N'hésitez pas à partager.

Amitiés à toutes et tous,

Sylvain.

News

News

News

campagne de collecte de dons.

News

FACEBOOK

ACCESS to the asso HORUS BIRDSHOT on FACEBOOK group

facebook page link

BIRDSHOT CONFERENCE

Complete file on the disease of birdshot in the world.

Record on:

-The Horus birdshot association
-the disease
-treatments
-the birdshot in the world
-hospitals
-doctors and teachers.

BIRDSHOT CONFERENCE

BIRDSHOT CONFERENCE

Statistics HORUS BIRDSHOT - 12 months
You will find below different statistics on our site internet www.Horus-birdshotfr.
What are the rules of support for these statistics?
1 / visit the site for more than 60 seconds
2 / count of all these passages by country
3 / global, comprehensive statistics
4 / 2 larger cohorts of patients statistics: Europe and the USA.

If we can logically deduce the number of patients present to this day in the world, we can still infer from this traffic a major interest on the different parts of the world, and thus, probably give geographical areas in which the birdshot is the present.

Horus Birdshot cute Sylvain
#birdshot

BIRDSHOT CONFERENCE

BIRDSHOT CONFERENCE

actions January 2019

actions January 2019

Article health journal January 2019

SICK UK AUDIO TESTIMONIALS

novelty 2018 booklet birdshot

HORUS BIRDSHOT INFO
THE BOOKLET ELECTRONICS OF 48 PAGES ON THE DISEASE OF BIRDSHOT IN FRENCH.

This booklet contains everything we can find on the disease.
Presentation of the association Horus birdshot, the explanation of the disease, my history, treatments, our supporters, the actions taken, the statistics of the birdshot in the world and of course, list hospitals that treat the disease worldwide) This list is in principle already more up-to-date because she lives every day and you can find it on the internet site).
It is a book which is available for download.
Friendly,.

Sylvain cute
Founding President.

make a donation

Everything what we fund is done completely privately, because although we are an association law 1901 approved, we have no public funding.
We need you, indeed.
Horus birdshot is:
-100 partner hospitals in nearly 25 countries
-130 doctors
-Contacts in more than 50 countries
-More than 2000 people who follow us on social networks
-More than 25000 visits on our website
-Of genetic research on the birdshot since November 2018
-Ophthalmologists, immunologists, researchers, specialists in genetics
-Partners
-Members
-Donors

petition ald Mrs. Agnès BUZYN mail

operation trip to birdshot

OPERATION trip in BIRDSHOT, (follow-up on our facebook page)
50 most beautiful sites to see in the world, but with the view of a person with the type birdshot choroiditis, or disease of birdshot.

As part of the awareness of the disease, it seemed interesting to involve all our friends in the life of a person with a birdshot, which would have the chance to travel the world.
Of course, the photos will be the most representative possible of this quevoit this last.
I would ask you therefore good see share as possible these images, and this, in order to inform as many people as possible.
This operation will also campaign donations to the research assistance (we are an association law 190 approved entitlement to tax deductions, so be generous!).

Happy travels to you all...
Trip n ° 1 to come...

sincere friendship
Sylvain cute
President Horus birdshot.

THEY ran the diagonal of fools for HORUS BIRDSHOT.

ACCESS to the asso HORUS BIRDSHOT on FACEBOOK group

facebook page link

Twitter

ACCESS to THE asso HORUS BIRDSHOT ON FACEBOOK GROUP

facebook page link

Living with uveitis

interview ALLO DOCTEUR 10 2016

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