Este sábado se emite el primer programa «Todos Somos Raros, Todos Somos Únicos» en La 2 de TVE

1.562 comentarios / Por /

Este espacio se enmarca dentro del proyecto “Telemaratón. Todos Somos Raros. Todos Somos Únicos”, impulsado por la Federación Española de Enfermedades Neuromusculares, la Federación Española de Enfermedades raras (FEDER) y la Fundación Isabel Gemio

– En cada programa asistirán como invitados personajes famosos que conocerán de primera mano la realidad de algunas personas afectadas por estas patologías.

9 de Enero – Ya está todo listo para la puesta en marcha del primer programa “Todos somos raros, todos somos únicos”. Esta iniciativa pretende concienciar a la sociedad y dar a conocer la importancia de este tipo de patologías. El programa comenzará el próximo 11 de enero a las 12:30 horas en La 2 de TVE.

Este espacio, que se prolongará hasta el mes de marzo, está enmarcado en la Telemaratón del movimiento «Todos somos raros, todos somos únicos» al que pertenecen la Federación Española de Enfermedades Neuromusculares (ASEM), la Federación Española de Enfermedades Raras (FEDER) y la Fundación Isabel Gemio.  El proyecto culminará el 2 de marzo con la celebración de una Telemaratón en directo en TVE.

Con esta iniciativa se pretende dar voz a los más 3 millones de afectados que en nuestro país sufren alguna de las 8.000 enfermedades poco frecuentes que existen en el mundo. El programa será presentado por Isabel Gemio y será un escaparate con las múltiples actividades del movimiento, como el abrazo solidario a la Mezquita de Córdoba o el calendario solidario con los jugadores del Atlético de Madrid.

En cada programa asistirán como invitados personajes famosos que conocerán de primera mano la realidad de algunos enfermos. Algunos de los famosos que ya han colaborado con nosotros son: Millán Salcedo, Miguel Ríos o Carlos Moyá. Asimismo, la mayor parte del programa estará formado por breves historias de enfermos y su entorno, que mostrarán las dificultades que supone vivir con algunas de estas patologías que no tienen tratamiento, son crónicas y en la mayoría de los casos degenerativas.

Durante el programa también se realizarán entrevistas a afectados que son ejemplo de integración en la sociedad, a pesar de sus diagnósticos, como Javier Botet, actor de películas de éxito como REC, Mamá o Las Brujas de Zugarramurdi, y que padece el Síndrome de Marfan, la misma enfermedad que padecieron Abraham Lincoln, la reina María de Escocia o Paganini.

Pero el fin último del programa será aportar, desde un matiz ameno, positivo y esperanzador, información sobre las enfermedades raras a través de científicos especialistas que hablarán de la situación actual en la investigación y últimos avances. Y por supuesto, el espectador podrá conocer nuevas tecnologías donde encontrar ayudas médicas y compartir con otras personas su realidad. Cada programa acabará mostrando el trabajo que realizan las asociaciones, tanto con su asistencia directa como recaudatoria y divulgativa.

Fuente: María de Luján Echandi García Herrera (FEDER)

1.562 comentarios en “Este sábado se emite el primer programa «Todos Somos Raros, Todos Somos Únicos» en La 2 de TVE”

  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. gateio hangi ülkenin

    I am a student of BAK College. The recent paper competition gave me a lot of headaches, and I checked a lot of information. Finally, after reading your article, it suddenly dawned on me that I can still have such an idea. grateful. But I still have some questions, hope you can help me.

  4. gateio

    I may need your help. I tried many ways but couldn’t solve it, but after reading your article, I think you have a way to help me. I’m looking forward for your reply. Thanks.

  16. 乱伦色情

    Hi there, I found your blog via Google even as searching for a similar topic, your web site got here up, it appears good. I have bookmarked it in my google bookmarks.

  19. hot fiesta играть

    I absolutely love your blog and find a lot of your post’s to be exactly I’m looking for. Do you offer guest writers to write content for you personally? I wouldn’t mind creating a post or elaborating on some of the subjects you write about here. Again, awesome blog!

  231. Теннис онлайн

    Unquestionably believe that which you stated. Your favorite justification appeared to be on the net the simplest thing to be aware of. I say to you, I definitely get irked while people consider worries that they plainly do not know about. You managed to hit the nail upon the top as well as defined out the whole thing without having side effect , people can take a signal. Will likely be back to get more. Thanks

  438. Duago

    Various factors, including the type of vehicle, rental location, length of stay, and demand during certain seasons, affect the cost of a one-month car rental. For precise pricing information, it is preferable to check the availability and exact rates on our platform. At Quick Lease Car Rentals, we source our vehicles from the most renowned car brands in the world. Apart from offering a wide choice of cars, we also give customers the option to customize their rent a car Dubai with attachments such as Bluetooth, power windows, baby seats, and more. Also, as our name suggests, we offer a quick and efficient solution to your travel needs within Dubai and Abu Dhabi. Whether it be for a day or a long-term period, customers can be guaranteed to receive the best price for the rental vehicle of their choosing.
    https://fun-wiki.win/index.php?title=Cheap_rental_minivans_near_me
    Contact us with your specific requirement or browse all available cars: To rent a premium car in Dubai, you must present a package of documents. The list of documents required to hire a luxury car in Dubai differs for tourists and residents of the UAE. Hire a Porsche in any Dubai locality or across the wider UAE, browsing online using a service like RentaPorscheDubai is the simplest way. Not only is it far easier to source hire cars this way, it also ensures customers gain the most competitive price. Many Dubai rental firms will also allow for travel to Abu Dhabi, Sharjah, and other emirates. This is my 6th time to lease a car from this car rental. They are the best superior car rental. Provide me new car. Trusted car rental As part of the rental process, you will need to provide a valid passport or national ID card. This identification document is necessary for verification purposes and ensuring that you meet the legal requirements to rent a car in Dubai.

  441. cwzmbwbbd

    Para transferir Bitcoin para sua conta bancária, é preciso acessar sua carteira digital ou plataforma de criptomoedas, vender seus Bitcoins e, quando os valores forem depositados em sua conta, solicitar a retirada de fundos via TED ou PIX. Central de Ajuda da Brasil Bitcoin Por exemplo, a Coin Cloud possui caixas eletrônicos que permitem o saque de Bitcoin em 25 localidades no Brasil, especialmente em capitais e grandes shoppings, como o Shopping Vila Lobos em São Paulo ou o Shopping Tijuca no Rio de janeiro. Para saber todos os locais, você pode acessar o portal da empresa. Esse contexto macroeconômico favorece a cotação do bitcoin no médio prazo, já que os analistas consideram a criptomoeda como um ativo de alto risco. “Pode haver um aumento da participação de detentores (investidores) de longo prazo no BTC. Caso isso ocorra, é provável que haja melhoria na performance geral do Bitcoin nos próximos meses”, avalia Fábio Plein, diretor regional para as Américas da Coinbase.
    http://www.fshrental.com/yc5/bbs/board.php?bo_table=free&wr_id=49599
    Assim, por meio da plataforma Avenue, o cliente, após a conclusão do processo de cadastro, poderá solicitar a transferência internacional de recursos, via operação de câmbio realizada pela Avenue DTVM, distribuidora regulada e aprovada pelo Banco Central do Brasil para realizar câmbio. Os saldos de caixa dos clientes em reais mantidos na Avenue DTVM não são garantidos por nenhum órgão brasileiro, nem são cobertos pelo SIPC (órgão regulador norte americano). Operações de câmbio acima US$ 300.000 por meio da plataforma serão realizadas pelo BEXS Banco de Câmbio S.A., que não é afiliado da Avenue. Euro é a divisa de Andorra, Mónaco, Montenegro, Malta, Países Baixos, Portugal, Eslovénia, Eslováquia, São Marino, Santa Sé (Estado Cidade do Vaticano), Zimbábue, Akrotiri e Dhekelia, Lituânia, Luxemburgo, Lituânia, Áustria, Bélgica, Chipre, Alemanha, Estónia, Espanha, Finlândia, França, Grécia, Irlanda, Itália, Kosovo.O símbolo de Euro é €, o código ISO é EUR.Euro subdivide-se em 100 Cêntimos.Taxa de câmbio EUR atualizada em 20 de Maio de 2024.

  446. Джак

    Wonderful website you have here but I was curious if you knew of any community forums that cover the same topics talked about in this article? I’d really love to be a part of group where I can get advice from other knowledgeable individuals that share the same interest. If you have any recommendations, please let me know. Bless you!

  475. theguardian

    Thanks for a marvelous posting! I truly enjoyed reading it, you can be a great author. I will be sure to bookmark your blog and will come back in the foreseeable future. I want to encourage you to definitely continue your great posts, have a nice morning!

  483. theguardian.com

    I am curious to find out what blog system you are working with? I’m experiencing some minor security problems with my latest website and I would like to find something more safe. Do you have any solutions?

  520. jvukansel

    A lot of gaming provides a flood of amusement. In addition to slots, the casino has a wide selection of table games and video poker that matches most of the competition. It’s a great chance for the US market to become involved in the whole casino product line. Both withdrawal delays and not obtaining a license at launch are major drawbacks. November 8, 2024 – January 4, 2025 Our team appreciated Bovada’s superb selection of online slots, featuring classics and modern online casino games. They also support sports betting if you like placing sports wagers, but the online casino remains its central aspect. If you’re looking for the best online casino payouts, then look no further then high payout casino games like 10 Times Vegas, 21 Wilds, 88 Frenzy Fortune, Alien Fruits, and Alkemor’s Elements. These modern slot machine titles boast superb and entertaining bonus features, excellent graphics and non-stop excitement.
    https://directory-broker.com/listings12781663/funny-games-2
    RealityScan is available today as a free download for iOS and iPadOS on the App Store. Earlier this year, Epic said an Android version would arrive later in the year, although the company is running short on time to meet that deadline. As was to be expected, Apple pulled the game from the App Store for violating the App Store guidelines within hours of the update’s appearance. Similarly, Google also pulled the game from the Google Play Store, though on Android, the game is still available via third-party stores and from Epic directly. While we are talking about the file location for installed games, we are also going to show you how to move an installed game from the Epic Games Launcher to another directory on your PC, which is simpler than you may think.

  577. uktudaygn

    I started out betting via the website, but later on, I downloaded the Mostbet app onto my smartphone. It’s much more convenient for me because I don’t even have a laptop, and before that, I only placed bets with my acquaintance via computer. I found a lot of pluses in the app because I can pull out my phone and place a bet at any time, and I can even do it live, keeping track of the outcomes and odds. Plus, I really liked the fact that the bonus at Mostbet is very big, and there’s even a cashback! I now bet all the time on my favourite football and cricket tournaments. Download the app, it works great, and there are so many benefits from it. I started out betting via the website, but later on, I downloaded the Mostbet app onto my smartphone. It’s much more convenient for me because I don’t even have a laptop, and before that, I only placed bets with my acquaintance via computer. I found a lot of pluses in the app because I can pull out my phone and place a bet at any time, and I can even do it live, keeping track of the outcomes and odds. Plus, I really liked the fact that the bonus at Mostbet is very big, and there’s even a cashback! I now bet all the time on my favourite football and cricket tournaments. Download the app, it works great, and there are so many benefits from it.
    https://www.blessin.info/forum/general-discussions/1xbet-affiliate-program
    As opposition leaders prepare for a third major rally against election fraud this Saturday, the odds of a Putin victory increased to 1-to-20 on Tuesday from 1-to-10 the day before — meaning a 100 ruble bet will now net only a measly 105 rubles in return. William Hill reported taking bets on Clinton to one day become president as far back as the 1990s, when her husband, Bill, was in the White House.Odds to win 2016 U.S. presidential election(Courtesy of William Hill U.K.) Reports over the last few weeks had indicated that poor results for the Conservatives in Thursday’s UK local elections could spark an early general election, but the odds suggest that is not likely to happen. However, Persily said that with the bureaucratic nightmare of the state ballot and electoral college that would follow any such vote, Republicans are very unlikely to bother unless Trump chooses to drop out.

  706. aeazyecek

    Learn more about how your support makes a difference or make a gift now Kanye West agreed to buy conservative social-media app Parler just weeks after being kicked off of Twitter (NYSE:TWTR) for making antisemitic comments. The proposed acquisition will assure Parler a future role in creating an uncancelable ecosystem where all voices are welcome. Ye can be found on Parler here. Parler caters to right-wing, far right and libertarian voices and fashions itself as a platform with fewer rules in support of free speech. It was briefly booted off the internet in 2021 due to its connections to the Jan. 6 attack on the U.S. Capitol. And its user base remains small. Parler caters to right-wing, far right and libertarian voices and fashions itself as a platform with fewer rules in support of free speech. It was briefly booted off the internet in 2021 due to its connections to the Jan. 6 attack on the U.S. Capitol. And its user base remains small.
    http://yofast.com.tw/?p=23367
    Privacy and Cookies Policy Zee News Hindi iOS App Lokmat Samachar लोकमत समाचारHindi Newspaper Daily newspaper published from Jagdalpur (Bastar) and Raipur, Chhattisgarh. The newspaper covering Chhattisgarh as well as Orissa. Prime Minister Narendra Modi’s 2-day tour of Kerala has sown the seeds of a paradigm shift in the political landscape in the God’s Own Country… Two dice are thrown. Find the probability that the numbers appeared ha… BBC News, Kochi List of Hindi newspapers primarily published in central and north India. This list also includes Hindi news websites as well as other news media sites including Radio channels. Two dice are thrown. Find the probability that the numbers appeared ha… The fourth-largest Hindi newspaper in India, Amar Ujala has a total circulation of 4.70 crores. An Indian daily newspaper called Amar Ujala is written and published in Hindi. The newspaper was established in Agra shortly after independence in 1948 and is today based in Meerut, Uttar Pradesh. The publication is widely dispersed in the states of Uttar Pradesh, Himachal Pradesh, and Uttarakhand, among others.

  986. Harryguiny

    Пин Ап Казино Официальный Сайт в России pinco пинап казино

  1495. fvefzrszh

    Fenty Beauty’s first product—the Pro Filt’r Soft Matte Longwear Foundation—was groundbreaking not only because of the impressive shade range but also because of the formula. Once applied, the foundation does not budge for hours, even on the those with super-oily skin. But if you have dry skin, you probably think the formula is too mattifying, as it has a tendency to emphasize dry patches and fine lines. Since, it’s been reported that some of the darker shades of foundation have been sold out worldwide. On my own trip to Sephora on Wednesday, I confirmed that most dark shades were sold out though some were still in stock. This is obviously telling that inclusivity not only is the right thing to do, but it sells. The beauty industry at large now needs to pay attention that it’s not only socially responsible to sell a range that meets all people’s needs, but it’s also lucrative to do so.
    https://apk.tw/space-uid-6694912.html
    Step 2: Small StrokesFor naturally fuller-looking brows, use small strokes to mimic your eyebrow hairs when filling in your brows. This will create the appearance of a thicker brow without looking drawn or stuck on. Follow this guide to find out how to fill in thin eyebrows with top tips for naturally fuller-looking eyebrows in just 5 minutes! However, many beauty experts agree that slightly darker eyebrows will give your face more of a youthful appearance, as the eyebrows provide a frame for your face and bring out your eye color. Finally, use nourishing products. Chose eyebrow gels that are infused with ingredients that work to visibly improve the appearance of sparse eyebrows. For example, our Brow Gel is infused with keratin, gingko biloba, proteins and multi-vitamins for a flexible hold and conditioning of the hairs.

Deja un comentario

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

Scroll al inicio