FARPE PARTICIPÓ EN EL ACTO OFICIAL DEL DÍA MUNDIAL DE LAS ENFERMEDADES RARAS

2.743 comentarios / Por /

Bajo el lema, “Si se quiere se puede”, la Federación Española de Enfermedades Raras (FEDER), celebró el Acto Oficial del Día Mundial en el Senado de España. Al acto asistió Germán López Fuentes, Presidente de FARPE y FUNDALUCE, representando a las personas que padecern retinosis pigmentaria u otras distrofias de la retina.

 En primer lugar, a través del testimonio de personas con enfermedades poco frecuentes, pudimos conocer de cerca su historia y acercarnos a su realidad.

Posteriormente, Milagros Jiménez Presa, Felix Casado, Sandra Beltrán y el pequeño Santi, leyeron  la Declaración por el Día Mundial de las Enfermedades Raras, y el Grupo de El Desván del Duende interpretó  la canción “Dí que si”, un himno a la esperanza que forma parte de su proyecto www.sisequieresepuede.com y que gracias a él han sido ganadores del Premio FEDER Extremadura.

Su Alteza Real la Princesa de Asturias pronunció unas palabras, en las que destacó que en «este Año Español de las Enfermedades Raras, hay muchas maneras de acompañar y comprometerse. No voy a enumerar la cantidad de iniciativas que desde Feder estáis promoviendo. Pero como en su día os dije, me gustaría ser vuestra voz y parte de ese compromiso es pedir a quien nos escuche que por favor se acerquen personalmente, o a través de las diversas posibilidades que ofrece la federación, y que conozcan cómo viven estas familias».

También añadió que le gustaría «llamar la atención sobre el trabajo fundamental que hacéis desde las asociaciones y desde la federación de enfermedades raras. Muchas veces no somos conscientes de ello y creo que es justo decirlo hoy aquí. Gracias por vuestro trabajo, que cada día se vuelve más difícil por las complicaciones de la situación actual. El mérito de seguir ahí para ayudar a tantas familias angustiadas que no saben qué hacer cuando les diagnostican una enfermedad poco frecuente, es enorme. Un mérito y un esfuerzo que quiero reconocer y agradecer».

Premios FEDER

Durante el acto se hizo entrega de los Premios FEDER 2013:

  • Premio a la Embajadora de las Enfermedades Raras, a Isabel Gemio, presidenta de la Fundación Isabel Gemio para la investigación de las Distrofias Musculares y otras enfermedades raras.
  • Premio a la Solidaridad, a Vicente del Bosque, Marqués de Del Bosque, seleccionador Nacional de Fútbol.
  • Premio a la labor periodística, a Irene Tato, directora de la Agencia Salud y Comunicación.
  • Premio a la Responsabilidad Social, a la Fundación Genzyme, y recogió el Premio Fernando Royo, Presidente de la Fundación.
  • Premio a Toda una Vida por las Enfermedades Raras, a Nicolás Beltrán, presidente estatal de la Asociación de Afectados del Síndrome de Marfan.
  • Premio a la promoción y defensa de los derechos, a la Fundación Fernando Pombo, recogiendo el premio Carmen Pombo, Directora de la Fundación.
  • Premio a la investigación en enfermedades raras, al Grupo de Trabajo de Genética Clínica y Enfermedades Raras de Semfyc (Sociedad Española de Medicina de Familia y Comunitaria), y recogió el galardón Miguel García, Coordinador del Grupo de Trabajo SEMFYC.
  • Premio al Entorno Educativo, al Colegio La Salle Virgen del Mar de Almería, y recogió el premio Inocencio Lorite, Director general del Colegio La Salle Virgen del Mar de Almería.
  • Premio especial autonómico–Andalucía, a Carmen Osuna, profesora de la Facultad de Medicina de la Universidad de Sevilla, recogiendo el galardón Moisés Abascal.
  • Premio especial autonómico–Cataluña, a Teresa Pampols, consultor senior de la Sección de Errores Congénitos del Metabolismo-IBC, del servicio de Bioquímica y Genética Molecular del Hospital Clínico de Barcelona.
  • Premio especial autonómico–Comunidad Valenciana, a Antonio Pérez-Aytes, responsable de la Unidad de Dismorfología y genética Reproductiva del Hospital Universitario y Politécnico La Fe de Valencia.
  • Premio especial autonómico–Madrid, a la Fundación Roviralta, recogiendo el galardón Javier Serra, Director de la Fundación.
  • Premio especial autonómico–Murcia, David Araujo-Vilar, profesor titular de medicina de la Facultad de Medicina de la Universidad de Santiago de Compostela.
  • Premio especial autonómico–País Vasco, a Antonio Álvarez, presidente de la Federación Española de Enfermedades Neuromusculares (ASEM).
  • Premio especial autonómico–Extremadura, El Desván del Duende, recogiendo el premio José Manuel Díez, Miguel Vivas, Jorge Fernández, y Antonio Habas.
  • Reconocimiento honorífico a los expresidentes de FEDER, entregándoles una placa individual a Moisés Abascal, Rosa Sánchez de Vega e Isabel Calvo

Fuente:

2.743 comentarios en “FARPE PARTICIPÓ EN EL ACTO OFICIAL DEL DÍA MUNDIAL DE LAS ENFERMEDADES RARAS”

  1. gate io borsası

    I am an investor of gate io, I have consulted a lot of information, I hope to upgrade my investment strategy with a new model. Your article creation ideas have given me a lot of inspiration, but I still have some doubts. I wonder if you can help me? Thanks.

  2. gate io startup nedir

    Thank you very much for sharing. Your article was very helpful for me to build a paper on gate.io. After reading your article, I think the idea is very good and the creative techniques are also very innovative. However, I have some different opinions, and I will continue to follow your reply.

  1946. new cs:go casino site

    Thanks for the marvelous posting! I genuinely enjoyed reading it, you are a great author. I will make certain to bookmark your blog and will come back later in life. I want to encourage you to definitely continue your great job, have a nice day!

  2089. mk bet game

    These kind of post are always inspiring and I prefer to read quality content so I happy to find many good point here in the post

  2139. Гостиничные Чеки СПБ

    Pretty portion of content. I simply stumbled upon your website and in accession capital to say that I acquire in fact enjoyed account your blog posts. Any way I’ll be subscribing in your augment or even I fulfillment you get right of entry to consistently fast.

  2147. XRumer23Jaifs

    Hello.

    This post was created with XRumer 23 StrongAI.

    Good luck 🙂

  2215. hot fiesta casino

    Hello there, just became aware of your blog through Google, and found that it is really informative. I’m gonna watch out for brussels. I will appreciate if you continue this in future. Many people will be benefited from your writing. Cheers!

  2219. дэдди казино

    Thank you for any other informative website. Where else may I am getting that kind of info written in such a perfect way? I have a challenge that I am simply now running on, and I have been at the glance out for such information.

  2257. tubidy

    Oh my goodness! Impressive article dude! Many thanks, However I am experiencing troubles with your RSS. I don’t know why I can’t join it. Is there anybody else getting the same RSS issues? Anybody who knows the answer will you kindly respond? Thanks!

  2262. tubidy mp3

    An intriguing discussion is worth comment. I believe that you should publish more about this subject, it might not be a taboo subject but usually people do not speak about these subjects. To the next! Kind regards!

  2278. Прогнозы на футбол

    Hi there, I do think your web site may be having browser compatibility issues. When I look at your website in Safari, it looks fine but when opening in Internet Explorer, it has some overlapping issues. I just wanted to give you a quick heads up! Apart from that, wonderful website!

  2302. amik-labuhanbatu

    After looking over a handful of the blog posts on your website, I honestly like your technique of writing a blog. I book-marked it to my bookmark website list and will be checking back in the near future. Please check out my website as well and let me know how you feel.

  2309. http://www.bruitsociete.ca

    Nice post. I learn something totally new and challenging on sites I stumbleupon everyday. It will always be helpful to read through articles from other authors and practice a little something from their web sites.

  2318. my link

    Hi there! This post couldn’t be written much better! Looking at this post reminds me of my previous roommate! He constantly kept preaching about this. I’ll forward this article to him. Fairly certain he will have a good read. Thanks for sharing!

  2326. their explanation

    Hi there! This blog post could not be written any better! Going through this article reminds me of my previous roommate! He constantly kept preaching about this. I’ll send this article to him. Pretty sure he will have a great read. Thanks for sharing!

  2348. click this

    Everything is very open with a very clear explanation of the challenges. It was truly informative. Your website is very useful. Thank you for sharing.

  2350. youtube downloader

    Can I just say what a relief to uncover someone who genuinely knows what they are talking about on the internet. You actually know how to bring a problem to light and make it important. A lot more people need to look at this and understand this side of the story. I can’t believe you are not more popular because you definitely have the gift.

  2361. tubidy mp3

    I blog often and I really appreciate your information. Your article has truly peaked my interest. I am going to bookmark your website and keep checking for new information about once a week. I subscribed to your Feed as well.

  2362. see post

    Spot on with this write-up, I actually believe this website needs much more attention. I’ll probably be back again to read through more, thanks for the advice!

  2364. snaptik

    Spot on with this write-up, I truly believe this amazing site needs much more attention. I’ll probably be back again to read more, thanks for the information.

  2373. y2mate

    Greetings! Very useful advice in this particular post! It is the little changes that produce the most important changes. Thanks for sharing!

  2377. convertidor mp4

    I wanted to thank you for this fantastic read!! I definitely loved every little bit of it. I have you book marked to look at new stuff you post…

  2391. купить JAC

    Fine way of describing, and nice piece of writing to take information concerning my presentation subject matter, which i am going to convey in academy.

  2403. youtube to mp3

    I blog frequently and I truly appreciate your content. Your article has really peaked my interest. I will bookmark your site and keep checking for new information about once per week. I opted in for your Feed as well.

  2405. full report

    You made some decent points there. I checked on the net for additional information about the issue and found most people will go along with your views on this website.

  2411. tubidy

    Excellent blog you’ve got here.. It’s difficult to find high-quality writing like yours nowadays. I truly appreciate individuals like you! Take care!!

  2412. theguardian.com

    I’m impressed, I must say. Rarely do I encounter a blog that’s both educative and interesting, and let me tell you, you have hit the nail on the head. The issue is something which not enough people are speaking intelligently about. I am very happy that I stumbled across this in my search for something relating to this.

  2425. porn

    When I initially commented I appear to have clicked the -Notify me when new comments are added- checkbox and from now on whenever a comment is added I receive four emails with the same comment. Perhaps there is an easy method you are able to remove me from that service? Appreciate it.

  2441. why not try here

    I’m impressed, I have to admit. Rarely do I encounter a blog that’s equally educative and entertaining, and without a doubt, you’ve hit the nail on the head. The problem is something which too few men and women are speaking intelligently about. Now i’m very happy that I found this in my hunt for something relating to this.

  2480. best site

    Hello there! This blog post could not be written any better! Looking through this post reminds me of my previous roommate! He continually kept talking about this. I am going to send this post to him. Pretty sure he will have a very good read. Thanks for sharing!

  2484. Slot Online

    I’m grateful for the informative content shared on your website; I discovered it via Google and will definitely return for future articles.

  2490. Casino Games

    Greetings everyone, I must say this is a wonderful article, and the thoughtful responses from everyone are making it all the more engaging for me.

  2530. porn

    I have to thank you for the efforts you have put in penning this blog. I am hoping to see the same high-grade content from you in the future as well. In fact, your creative writing abilities has inspired me to get my own site now 😉

  2533. this article

    I’m amazed, I must say. Rarely do I encounter a blog that’s both educative and engaging, and let me tell you, you’ve hit the nail on the head. The problem is something which not enough folks are speaking intelligently about. I’m very happy that I stumbled across this during my hunt for something relating to this.

  2535. tubidy

    An intriguing discussion is definitely worth comment. I do think that you ought to write more about this subject, it may not be a taboo matter but usually folks don’t speak about such topics. To the next! Best wishes.

  2536. tubidy

    May I simply say what a relief to find someone that genuinely knows what they are talking about online. You actually know how to bring an issue to light and make it important. More and more people need to read this and understand this side of your story. It’s surprising you aren’t more popular given that you surely have the gift.

  2546. porn

    I’m impressed, I must say. Rarely do I come across a blog that’s equally educative and interesting, and let me tell you, you’ve hit the nail on the head. The problem is something that too few folks are speaking intelligently about. I am very happy I stumbled across this during my hunt for something relating to this.

  2564. mesothelioma compensation

    After I initially commented I seem to have clicked on the -Notify me when new comments are added- checkbox and now each time a comment is added I get four emails with the exact same comment. There has to be a means you are able to remove me from that service? Thank you.

  2572. xxx mom son fuck HD movies

    I truly love your site.. Very nice colors & theme. Did you develop this website yourself? Please reply back as I’m planning to create my very own site and want to know where you got this from or exactly what the theme is called. Appreciate it!

  2584. jav porn

    Great information. Lucky me I recently found your website by accident (stumbleupon). I have bookmarked it for later!

  2590. tubidy

    Your style is very unique in comparison to other folks I have read stuff from. Thank you for posting when you have the opportunity, Guess I will just book mark this blog.

  2592. tubidy

    Good info. Lucky me I ran across your website by accident (stumbleupon). I’ve saved as a favorite for later!

  2597. tiktok downloader

    I blog often and I truly appreciate your information. The article has truly peaked my interest. I am going to bookmark your website and keep checking for new information about once per week. I subscribed to your Feed too.

  2614. porn

    This page really has all of the information and facts I wanted about this subject and didn’t know who to ask.

  2619. discover more here

    Hi! I just wish to give you a big thumbs up for the great information you’ve got right here on this post. I am coming back to your web site for more soon.

  2656. porn

    Greetings! Very useful advice within this article! It is the little changes which will make the most important changes. Thanks a lot for sharing!

  2661. 100 USDT

    I don’t think the title of your article matches the content lol. Just kidding, mainly because I had some doubts after reading the article.

  2664. check here

    You ought to be a part of a contest for one of the highest quality blogs on the net. I’m going to highly recommend this blog!

  2710. tubidy mp3

    Everything is very open with a clear description of the challenges. It was truly informative. Your website is very helpful. Many thanks for sharing!

Deja un comentario

Tu dirección de correo electrónico no será publicada. Los campos obligatorios están marcados con *

Scroll al inicio