Soyez acteur de la Journée Internationale des patients porphyriques

Become Actor for the Porphyria International Patient Day,June 25th, 2017.

Failed

Contributions

04/01/2017

End date

€1,285

Out of €3,500

36 %

Soyez acteur de la Journée Internationale des patients porphyriques

Take Part in the International Meeting of Patients with Porphyria! On June 25, 2017, in Bordeaux in France, patients of all Nationalities will meet for the International Congress Porphyrins and Porphyria 2017. A day devoted entirely to patients, meetings with the laboratories concerned, doctors an especially to the round tables devoted to the questions that confront patients. It will also be a unique opportunity to get answers to the questions that patients are asked around round tables. We strongly wish for all the patients from all over the world to have access to this gathering. And for this we need your help. Who am I? I am Corinne, and I am a volunteer for the French Association of Patients with Porphyria. Porphyria are rare genetic diseases that are still poorly known and can cause enormous pain. Every 2 years is organized a meeting between patients all over the world, because who says rare disease, also says isolation for each of the patients. This year, it will take place in France,in Bordeaux, and as a volunteer of the Association, I want to ensure that we can accommodate as many patients as possible, but also to ensure that all interventions by doctors, Roundtables can be recorded so that those who live farthest, can access them .... If you would like to learn more about these diseases, such as PPE: https://www.youtube.com/watch?v=j6SbdwzzrKE <iframe allowfullscreen="" frameborder="0" height="304" src="//cdn.embedly.com/widgets/media.html?src=https%3A%2F%2Fwww.youtube.com%2Fembed%2Fj6SbdwzzrKE%3Fwmode%3Dopaque%26feature%3Doembed&wmode=opaque&url=http%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3Dj6SbdwzzrKE&image=https%3A%2F%2Fi.ytimg.com%2Fvi%2Fj6SbdwzzrKE%2Fhqdefault.jpg&key=ff2702755d9749cda571c6d6c2f3eb46&type=text%2Fhtml&schema=youtube" width="540"></iframe> Every year the French association walk to the benefit of rare diseases <img alt="Marchemaladiesrares2016-3-1486920185" src="https://d3v4jsc54141g1.cloudfront.net/uploads/project_image/image/392938/MarcheMaladiesRares2016-3-1486920185.jpg">

Allocation of funds

The more you are to participate, the more we could offer the attending patients to have an unforgettable day. Let’s not stop at the indicated goal and blow that counter up!!! Help us, help you. Help us. - Finance the video recording of this International Congress, so that patients from all around the world be able to have access to this unique day. ( 1500 euros) Help us. - Finance a media event in the city of Bordeaux! In order to inform what Porphyrin is as well as all Porphyria! The day prior to the congress we will organize a gathering of people equipped with anti-UV umbrellas. We will use EPP as a first introduction to the extreme painful porphyria photosensitivity, since it is the most visual one. We need you help to fund the acquisition of anti-UV umbrellas. ( 750 euros) Help us. - Finance the translation: English will be the primary language used for the congress. Even though the entire day will be translated in French. We hope to have as many translators as possible to accommodate several countries. As we strongly wish for all to have access to the videos, we will need translators to have subtitle the videos in several languages. ( 1250 euros) We want this day to be as interactive as possible, spontaneous and close to Your preoccupations. Help us help you make this day an unforgettable one. You can find the Congress’s schedule for the day here: https://icpp2017.org/patient-day-agenda/ For 5 euros A great Thanks! For €15 and more Unlimited An autographed photo from the French organization of porphyria patients; of the anti-UV umbrella event on Place de la Bourse. (Think about giving us your email!) For €30 and more Unlimited An mp3 recording of the conferences of June 25th 2017. (Think about giving us your email!) For €40 and more Unlimited Just as if you were there… All the videos of the conferences on June 25th 2017 and the interactions with the experts, the answers to your questions, just as if you were there. (Think about giving us your email!) thanks so much much much... All your donations will go to the Association directly which deals with the organization of these enjoyed. And we hope to exceed our objectives so that these meetings can be done around a meal, or buffet ...