In his first State of the Union address, U.S. President Joe Biden touted his success in uniting much of the world against Russian President Vladimir Putin’s invasion of Ukraine. VOA’s Senior Diplomatic Correspondent Cindy Saine reports.
Actions and campaigns from different health organizations with the aim of raising awareness about rare diseases, making visible and focusing on the essential needs of patients to improve their quality of life and that of their families or caregivers. February 28, World Day
Rare diseases are a challenge for more than 3 million patients, families and caregivers in Spain.
Facing the diagnosis, as well as access to treatments and the routines of daily life, leads to commemorating World Rare Disease Day every February 28 to highlight and claim greater social awareness of these pathologies.
Diagnosis and research, two challenges on the table
According to the World Health Organization, it is estimated that there are more than 300 million people living with some type of rare disease.
Detection and investigation are the main challenges faced by these patients.
The diagnosis arrives for 50% of patients after four years of waiting, and for 20% after ten years.
according to data from the Study ‘ENSerious, quality of life’ of the Spanish Federation of Rare Diseases.
This delay negatively influences access to treatment. In the case of patients who need therapeutic interventions as soon as possible, this delay means that in 31% cases of disease worsen.
Another of the claims made by patients focuses on the need to promote research and accessibility to treatments.
The 47% of people with rare or infrequent diseases have no treatment or, if you have it, it is not the right one.
In addition, 66% of patients indicate that their disease prevents them from carrying out daily activities that allow them to be autonomous, to a great extent or quite a bit, according to FEDER.
More than 40% are not satisfied with their situation regarding leisure and free time activities and, in general, with the quality of life that their disease allows them to have.
collects the study ‘Social and Health Needs of people with Rare Diseases in Spain’ (Study ENSerio, quality of life’) of FEDER.
‘The Rares’
Within the framework of this World Day, the pharmaceutical company Pzifer and FEDER have joined forces to launch the ‘Las Raras’ brand.
T-shirts to make rare diseases visible from the Pzifer and FEDER campaign
With it, they invite society to put themselves in the shoes of people who live with this type of rare pathology.
For each order, the buyer will receive their purchase at home along with a card where they can learn relevant data about rare diseases.
An example of relevant data: There are more than 6,000 types of rare diseases and only 5% have an approved treatment.
Stars against intolerance and inequality
Rare diseases have little visibility, a fact that leads patients to experience lack of tolerance and inequality.
More than 30% of people with rare diseases have experienced discrimination in their education due to their disease.
points out the ‘Study ENserio’ of 2017 by FEDER.
The difficulties that these people face not only affect those who suffer from it, but everyone around them.
Their families and caregivers suffer an economic impact due to expenses and reduced working hours, according to the aforementioned study.
Another FEDER project on this World Rare Disease Day FEDER is in alliance with Alexion Pharma Spain.
Together they have launched a virtual challenge to make visible people who live with this type of disease: #IlluminatedbyRareDiseases.
Ilumina Challenge for Rare Diseases / ERDF and Alexion Pharma Spain Campaign
The challenge invites society to help build a constellation of virtual stars of the FEDER symbol: a four-leaf clover.
Once the challenge is complete, Alexion agrees to donate 18,000 euros to FEDER to carry out these three star projects to improve the needs, education, awareness, equity and research of rare diseases.
“There are millions of people in Spain who live an extraordinary life every day: a life with a rare disease. Those affected are the hidden stars and deserve recognition beyond their medical needs, as many experience socioeconomic challenges in their daily lives.”
declares Juan Carrión, president of FEDER.
The key to multidisciplinary research
The Spanish Multidisciplinary Society of Systemic Autoimmune Diseases (SEMAIS) vindicates research with the motto ‘Research is our hope’.
«Research in the field of rare diseases is the present and the future of these pathologies, many of which are little known. It allows us to characterize patients, assess risk and prognostic factors and possible new therapeutic targets. Multidisciplinary management through functional units, committees and consultations with circuits shared by all specialties is another of the fundamental pillars in the care of patients with rare diseases”.
emphasizes Dr. Patricia Fanlo, president of SEMAIS.
The importance of collaborating between different specialties to help assess rare diseases is another of the objectives pursued by this society.
EFE/Javier Belver
The doctor Carmen Pilar Simeón, scientific director of SEMAISvalues the importance of clinical research as fundamental.
«Necessary to define groups of patients with similar characteristics and, thus, be able to define the different subgroups with the same clinical profile. On the other hand, basic research is essential to define the genetic characteristics and the different biomarkers».
Carmen Pilar Simeón, scientific director of SEMAIS.
For its part, the Spanish Federation of Neuromuscular Diseases (ASEM) calls for the public authorities to increase “the incentives for biomedical research and multidisciplinary health care for rare diseases with specific resources”.
«Treatment orphans, rare because infrequent»
Within rare diseases, some types of cancers called “rare” are collected.
On this type of pathology acts the State Transversal Group of Orphan and Rare Tumors (GETTHI) that today, more than ever, dedicates all its efforts to fighting cancers “orphans of treatment and rare because they are infrequent”.
And it is that this type of tumors, which account for 24% of the European totalmay not be “so strange when we take into account their molecular biology,” they point out from GETTHI.
A researcher in a laboratory working on the so-called “orphan drugs” of rare diseases. EFE / Julio Munoz
Frequent and infrequent tumors can share molecular alterations that make them a common “target” for targeted pharmacological treatments, “what we commonly know as precision oncology”.
“It has been seen that a sequenced tumor sample can identify a wide range of mutations that can be triggered by different drugs. In general, around 50% of patients who undergo massive data sequencing (NGS) have at least one target mutation with potential targeted therapy.”
explain from the GETTHI Group.
This perspective offered by GETTHI makes it possible to increase the chances of survival and a better prognosis for thousands of patients affected by rare cancers.
For this reason, this group has launched a project that offers a transversal and free service to professionals from all over Spain.
“The creation of ‘National Transversal Molecular Tumor Board’ It is completed with the case registration platform that has been launched to collect information at a Spanish and international level. All this to increase knowledge and improve the approach to all types of cancer, not just the most common ones.”
With all these entities, and others, fighting hand in hand for research, improvement of diagnosis and treatment, as well as for improving the quality of life of patients and their survival, World Rare Disease Day brings a solidary course, scientific, human and social.
Every link is a portrait or a mirror and life grows when it communicates. We come together to create. There is a collective conscience that disposes us to talk, to listen, to reach agreements. It is invented since the beginning of time. Differences are reconciled when there is group action, when the path is the union of talents and efforts around the common interest. History provides countless moments and nation processes that began with everyone’s trust. In the union of generations around a consensus. Every anthology is personal, but social life takes place between communicated beings that vibrate.
The nut of that coming and going of the country with its desires, joys and crossroads, is being recorded in the stories told by newspapers and magazines, broadcast on the radio, or enter the chapter of memories of unforgettable images on television or current formats of the digital world. The good, the bad and the ugly of a diverse and critical nation that is always on display. The media have been there to say so. It is part of everyday life that is kept in the closet of memories, and the duty of those who had the privilege of telling it. The chroniclers of yesterday and today who are weaving the pieces of the puzzle. The breviary of the news that is amplified.
This is a challenging time. An hour of decisions. The pandemic continues to gravitate as a random and uncertain enemy. Economies continue to suffer, needs grow, interest groups diversify, violence reappears. There are enough reasons to join the defense of a right, or of all, accompanied by the conviction of believing and trusting in free and responsible communication as an authentic value. Technology changed the world, but fake news and bias also lurk with their echo chambers. In contrast, there are examples of collaboration, fair competition, fair play or union around the fire of higher interests, which deserve to be known or recounted.
Life is made up of opposites that manage to transfer dissent; of productive coexistence between differences and affinities. Communicating to unite and uniting in communication Like an encircling thread facing the country and its democratic challenges, it is an invitation to delve into this special created to understand and verify that, among Colombians, there is much more that unites us than what separates us. It is also supported by the brands that accompany us and share their space and their messages. It is also the occasion to vindicate the sixty years of the Colombian Information Media Association (AMI), an organization that believes in Colombia and that, through the journalism of its members, has shown its lights and its darkness.
Colombia Unida, where differences can live, is also a recognition of the inspiring principle that today moves the country’s newsrooms that have been reconstituted after the pandemic: collective creation. It is in the debate in the editorial boards, in the corridors of the media or in the back rooms of journalism, where the stories that summarize us as a country germinate. Those that are delivered here constitute an inciting inventory to read, hear or see, thinking that social union is possible as a reunion compass against indecision. Those of a society that, by uniting, can face the ups and downs of history with common firmness.
Thus, all the member media of the Colombian Association of Information Media (AMI) join in this special editorial, to contribute to this purpose, working together, sharing content and agreeing that with what we manage to do together we multiply and contribute more.
The United States secured its first gold medal of the 2022 Beijing Winter Olympics Wednesday when Lindsey Jacobellis won the women’s snowboard cross competition.
The 36-year-old Jacobellis has been the dominant figure in the short history of the sport, but has come up short in her quest for Olympic gold since her debut at the 2006 Olympics in Turin, Italy. She was heading to a certain gold medal at the Turin Games when she slipped and fell attempting a flashy move during a jump on the final leg of the race, forcing her to settle for the silver medal.
From left silver medalist France’s Chloe Trespeuch, gold medalist United States’ Lindsey Jacobellis and bronze medalist Canada’s Meryeta O’Dine celebrate during the venue ceremony for the women’s snowboard cross at the 2022 Winter Olympics, Wednesday, Feb. 9, 2022, in Zhangjiakou, China. (AP Photo/Lee Jin-man)
Chloe Trespeuch of France won the silver medal Wednesday, while Canada’s Meryeta Odine took home the bronze.
Jacobellis’s win came hours after U.S. skier Mikeala Shiffrin, the most dominant women’s Alpine skier of her generation, endured another shocking failure in her quest to add to her Olympic gold medal collection. Shiffrin was just seconds into her first run in the women’s slalom competition when she missed a gate and skied off the course, resulting in her disqualification, and sat despondent and dejected on the side of the course for several minutes.
Petra Vlhova of Slovakia took the gold medal in the women’s slalom, with Katharina Leinsberger of Austria taking the silver medal and Wendy Holdener of Switzerland winning bronze.
Also Wednesday, 21-year-old Birk Ruud of Norway won the gold medal in the men’s freestyle big air competition, with American Colby Stevenson taking home the silver medal, six years after suffering massive injuries in a near-fatal automobile crash, including a fractured skull. Sweden’s Henrik Harlaut won the bronze medal.
American snowboarders Shuan White and Chloe Kim both qualified to advance to the finals of the men’s and women’s halfpipe competition, respectively. The 35-year-old White, a three-time gold medalist, is competing in his final Winter Olympics, while the 21-year-old Kim is seeking to defend the gold medal she won at the 2018 Olympics in PyeongChang.
Five female ski jumpers have been disqualified from the Beijing Olympics after the International Ski Federation (FIS) ruled that their suits were too big.
Katharina Althaus, of Germany, soars through the air during a women’s normal hill ski jumping training session at the 2022 Winter Olympics, Friday, Feb. 4, 2022, in Zhangjiakou, China. (AP Photo/Andrew Medichini)
Germany’s Katharina Althaus, Silje Opseth and Anna Odine Stroem of Norway, Japanese jumper Sara Takanashi and Austria’s Daniela Iraschko-Stolz were all disqualified from taking part in the inaugural mixed team event, which featured teams with two women and two men each.
Althaus denounced the FIS decision, saying they “destroyed women’s ski jumping.”
Slovenia won the gold medal in the event, with the Russian Olympic Committee team winning silver and Canada the surprise bronze medal winners.
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Andrew Sampayo.
Photo:
Taken from social networks.
The young man died in the early hours of Monday, January 31, after the crash and explosion of his truck.
Find the validation of El Cazamentiras at the end of the news.
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February 04, 2022, 09:44 AM
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Maria Alejandra Rodriguez Castellanos February 04, 2022, 09:44 AM
Andres Felipe Sampayo Guerrero He died in an accident in San José, California (United States), in the early hours of Monday, January 31.
(You may be interested in: They denounce the disappearance of a thousand bodies from the Bucaramanga cemetery)
According to US media, the Toyota brand vehicle in which Sampayo was traveling collided on I-680 northbound, in an area near Concord Avenue, in California, and exploded.
Although the authorities came to attend to the emergency; the driver had already died in the accident.
Family and friends reported him as missing on Tuesday, February 1, and on the 3rd of this month they were given the news of the death of the recognized Santanderean photographer.
(Also: Sicarios assassinated the commander of the Police of El Cerrito, Santander)
Andrés participated in different photo sessions in Bucaramanga and Santander, where he was recognized for the photography of models and products. He was a graphic designer and lived in the United States, where he had a photo studio.
BUCARAMANGA
BU
February 04, 2022, 09:44 AM
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Maria Alejandra Rodriguez Castellanos February 04, 2022, 09:44 AM
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The U.S. Defense Department said Wednesday that it was deploying advanced fighter aircraft to the United Arab Emirates to help protect the country against the threat posed by Yemen’s Iran-allied Houthi rebels.
In a statement, the Pentagon said Defense Secretary Lloyd Austin informed UAE Crown Prince Mohammed bin Zayed Al Nahy via telephone Tuesday that he was sending the aircraft to bolster U.S. military support for the country.
Austin also agreed to send the USS Cole, a guided missile destroyer, to assist the UAE navy and make a port call in Abu Dhabi, the department said.
It said the deployments were meant send “a clear signal that the United States stands with the UAE as a long-standing strategic partner.”
Yemen’s Houthi rebels recently launched three missile attacks on the UAE, including a foiled attempt that targeted a base that hosts U.S. forces.
The Houthi movement, which is fighting a Saudi-led coalition in Yemen that includes the UAE, has claimed responsibility for the attacks.
The most recent attack occurred during a visit Monday by Israel’s president, when UAE forces intercepted a missile. Israel and countries on the Arabian Peninsula have pursued closer relations in recent years as a bulwark against Iran.
Israeli Defense Minister Benny Gantz began a two-day visit to Bahrain on Wednesday, during which he will sign a security agreement with Bahraini leaders, according to Israeli media reports.
The Biden administration has said it is considering financial sanctions against the Houthi rebels and their leaders as part of an effort to get the Houthis to join talks to wind down the war in Yemen. The eight-year conflict has devastated Yemen, a nation where of millions of people have been pushed into poverty by clashes and government mismanagement.
Some information for this report came from Agence France-Presse, The Associated Press and Reuters.
