birdshot horus

Référents


OPERATION 2019-2020 - HORUS BIRDSHOT Referents
OPERATION "TIME IS NEVER LOST WHEN IT IS GIVEN TO OTHERS


OPERATION 2019-2020 - HORUS BIRDSHOT Referents
OPERATION "TIME IS NEVER LOST WHEN IT IS GIVEN TO OTHERS"

It's almost nine years since I created the association Horus birdshot, dedicated to the birdshot disease. At first, and in the urgency of my situation, it was, in my mind, essentially dedicated to finding quickly enough to set up research, find the right doctors, and give the opportunity to the sick of the world whole, to be aware of all the possible news on this disabling pathology.

We have done a lot of things in these areas: research is underway, we now know the birdshot specialists in the world, the patients are better monitored, the management of the disease is increasingly taken into account according to regions (in France), although this is not yet the case everywhere. We have organized numerous media actions to publicize the disease. We made a lot of awareness among professionals.
But in this frantic race to the ultimate goal (find a medication that allows us to heal) I think I have partially set aside the patients and their willingness to communicate with each other.
I therefore wish to "remedy" this.
For the 2019-2020 season, I would like to set up a "grassroots" organization of patients who wish to get involved (in a very punctual way, this is not a job!) In our organization, locally (regions with France, and all over the world).
This mission of local correspondent could be organized as follows:

- Organize meetings with patients in the sector
- To be the privileged contacts of the local patients
- Organize the actions if you wish
- Associate the local press
- Or any other punctual operation (little time needed, but a real will)

These are just examples, and in no case should this be a chore. The energy spent on helping the sick, and thereby helping the research, will depend on everyone, and every little action will be a real and concrete step towards a faster healing.

Thank you in advance for kindly, both to give your opinion, and of course, your motivated applications, OR THAT YOU ARE IN THE WORLD, because the disease has no borders!
by email to: contact@horus-birdshot.fr

Friendships to all,

Sylvain MIGNON
Founding President Horus birdshot.

Plus...

recherche

Nous cherchons des référents de l'association Horus birdshot, dans le monde entier

contact@horus-birdshot.fr


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