En Vivo I Emisión Estelar con #kharlapolonio de #informativosta 4/03/2025
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00:00We will start with the news, the Executive Power announced this Tuesday the appointment of several
00:10vice-ministers in the ministries of Presidency, Public Health, Energy and Mines and Public Works
00:16through Decree 103.25. We will start listing some of these appointments, such as in the Ministry of
00:25Public Health and Social Assistance were appointed Luis Nelson Rosario Socias as Vice Minister
00:31for Provincial Directions and Gina Beatriz Estrella, Vice Minister for Risk Management and
00:37Environmental Health. Also in the Administrative Ministry of the Presidency was appointed
00:44Ronald Sánchez as Vice Minister of Government and Society. As for the Ministry of Energy and
00:52Mines, through Decree 103.25 was appointed as Vice Minister of Energy Antonio Alfonso
01:00and as Vice Minister of Nuclear Energy Gadis Enrique Corporal. In the Ministry of Public Works
01:07and Communications were appointed Miguel Ángel Logroño as Vice Minister of Supervision and
01:14Fiscalization, Fernando Irán Taveras, Fernando Augusto Murguzmán, Oliver José Nazario Vrugal
01:21among others, in addition to various appointments in EGEIT, ETED, the Dominican Port Authority
01:30and INAVIE. Earlier, the Dominican Government approved, through Decree 107.25, Decree 30.25
01:41of January 17, 2025, which regulated the perception and application of ITEBIS in digital services
01:49consumed in the country and provided by providers from abroad, services such as Netflix, Spotify
01:57and other mass-use digital platforms in the Dominican Republic. The announcement was made
02:03by Homero Figueroa, Director of Strategy and Communication of the Presidency of the Dominican
02:09Republic, through his account on the ex-social network. As explained, Decree 107.25, signed
02:17by President Abinader, establishes in Article 1 the repeal of Decree 30.25, while Article
02:252 orders its notification to the corresponding institutions for its knowledge and execution.
02:33The provision was issued in Santo Domingo on March 3, 2025.
02:41In other news, legislators of the Officialist Party described as a violation of the order
02:48and regulation of electoral laws, the recent announcement of the Party of the Dominican
02:54Liberation on the dismissal of its presidential candidate next year. According to congressmen,
03:00this action could be interpreted as an irregular advance in the electoral process,
03:06which would generate an atmosphere of uncertainty and tension in the political sphere.
03:11Roberto Brito has the details.
03:15With three years to go for the next elections in 2028, the purple party has advanced in time
03:20with the announcement that in the coming months it would choose its candidate to govern the country,
03:25what the deputy for the Romana Eugenio Sedeño questions these pressures.
03:29The criticism of the officialism in Congress occurred less than 12 hours after the decision
03:34of the political committee of the party founded by Juan Bosch.
03:37He sends a message of despair or disrespect to the rules.
03:42The Junta has the claws to apply it. What happens is that, like cats, many times hides the nails.
03:47While other officialist congressmen describe as indelicacy that the Peruvians continue
03:53violating the regulations of the Central Electoral Board, despite the call of the body
03:58to stop all kinds of propaganda in a hurry.
04:01We continue to believe that it is a state of separation of the PLD, it has shown it on other occasions,
04:08it has not given results, but if they understand that by doing the same,
04:13achieving equal results, they will have advantages, I think they should be reviewed.
04:20However, they as an organization are in full right to assume,
04:25as long as they respect the deadlines, as long as they respect the spaces, the procedure.
04:30That is part of what is the political life of the institutionally internal parties.
04:34On his side, the parliamentary panelist Charlie Mariotti Jr. came out in defense
04:38of the decision of the political committee of his organization.
04:41We will be carrying out an internal process of conversation, of consolidation of a single candidate,
04:46and that does not collide at all with any resolution or any law.
04:49We will do so with full respect to all the laws of the Dominican Republic, as the PLD has always acted.
04:54Last week, the Central Electoral Board issued a statement warning political organizations,
04:59as well as independent candidates, to discontinue the campaigns in a hurry,
05:04and that those who continue to violate these rules will be administratively sanctioned.
05:09Roberto Brito, Informativos, Tenantillas.
05:13Let's change the subject.
05:14Rice producers rule out the scarcity of cereals and attribute the alleged lack
05:19to the manipulation of several merchants who seek import permits.
05:24Guillermo Garcia has the details.
05:26This is what producers and millers said during a press conference this morning.
05:31The National Rice Commission, made up of the official sector, producers, processors and merchants,
05:38maintain the same prices as in 2024.
05:44We are selling rice, and we have enough rice, in unlimited quantities,
05:49to guarantee the demand of the trade at a price of 31.68 pesos per pound.
05:57They warned that this misinformation, which they call a scarcity,
06:01attacks 35,000 producers and more than 100,000 employees.
06:06However, fillers from different neighborhoods of the capital deny the producers
06:11and say that the price of rice has gone up.
06:15Yes, the price of rice has gone up. The field rice is sold at 55 pesos.
06:20Everything is going up, brother. Right now, everything is going up.
06:23In less than three months, the price of rice has gone up about twice.
06:27The pound of rice remains between 60 and 50.
06:31And as always, in the end, the housewives carry more weight.
06:35The few times I buy it, in Colmado, yes, even in supermarkets, you can see the increase, of course.
06:41Rice producers did not want to identify the groups that, according to them, are distorting reality.
06:49Guillermo García, Informativos, Teleantillas.
06:54With this information, we make our first break.
06:57You do not change it. We'll be back with more news.
06:59Thank you for keeping up with us. We continue with the news.
07:06Zero exoneration of taxes for legislators and other professionals in the area, such as the cinema,
07:13propose a bill that was deposited this Tuesday in the National Congress.
07:18The project seeks a fiscal balance.
07:20This was explained by the reformist deputy Rogelio Alfonso Genao, who is the proponent of the piece.
07:27In addition, former president Hipólito Mejía also referred to the issue.
07:31What is not paid in the Dominican Republic is around 400 billion pesos.
07:37And there are sectors that already in the incentive laws have fulfilled their role, or that are used in an incorrect way.
07:46For example, the issue of sex in relation to legislators is worth about 9 billion pesos.
07:53The cinema law is worth 8,500 million pesos.
07:56And we see how the laws are closing and how other people who use this law have not fulfilled their role
08:02to evade their fiscal responsibilities.
08:05I agree with that. But if it is true, it is correct.
08:09Because it will continue to build up that poor country so that it kills itself in a tremendous way.
08:14But I tell you, I do not know the details of that.
08:17On the subject, the president of the Senate, Ricardo de los Santos, also referred
08:22that if the elimination is applicable to all, he would not be opposed.
08:27In Azua, the cases of malaria are generating concern, which are increasing every day.
08:33Also, emergencies in hospitals are receiving cases with symptoms of the disease.
08:40In epidemiological number 7 of this year, Azua is in mourning for the cases of malaria.
08:46The situation has concerned the inhabitants of this locality.
08:49Well, it gives a lot of fever, headache, stomach pain.
08:53There are a lot of viruses, but that abounds more, malaria.
08:58And it is that in the emergencies of the different health centers,
09:02patients with these symptoms have increased, mainly in children.
09:07There is a lot of malaria because the boys are screaming all the time with a fever, a lot of infections.
09:14I don't know, but a lot of people come here with fever and everything.
09:20A lot of flu, a lot of flu and fever too.
09:24You know that they have given a virus with a lot of pain in the body, a lot of discomfort.
09:31One day you wake up with something in one place, you take it off and put it in the other, and so on.
09:36Yes, a lot of fever, a lot of headache, flu.
09:41You have a flu and it lasts up to a month and a half and so on.
09:44In relation to the issue, the provincial health director said that staff has been reinforced to go in search of feverish cases.
09:51The patients who are positive for malaria, their medication is being given on time, no matter where they are.
09:59But the attention is there.
10:03The minister has hired 30 people to work.
10:10We have Tabar Arriba, Las Gallas, Tabar Abajo, Sabanayegua, and Submunicipio, El Cuatro, Ganadero.
10:20Those are the most affected.
10:22Johansi Nova, Teleantillas News.
10:25The concern is seized by residents of Santiago and another region of the CIBAP
10:30after the increase in patients who go to the emergency centers with symptoms associated with COVID-19.
10:38Julio Dominguez was in charge of the issue.
10:40The reactivation of these viruses is felt daily in the children's population,
10:45where hundreds of mothers go to the Children's Hospital Dr. Arturo Grullon of this city, Corazon.
10:51Oh yes, too many, many children with symptoms, a lot of flu, a lot of things.
10:58Yes, a lot of fever and flu, that's it.
11:02How was this situation?
11:04Something, imagine, it's hard for the mother, because imagine having a sick boy like this, it hurts.
11:13Fever, headache, stomach pain, and respiratory problems
11:17are the symptoms that patients who are overflowing with the emergencies of the Hospital José María Cabral Ibaez and Arturo Grullon de Santiago say they have.
11:27Cough, fever, nasal congestion, all that.
11:33Yes, there are many children who also have pneumonia and flu.
11:37While the commercialization of masks began to reactivate,
11:41as a result of the large number of people who have made the decision to take care of themselves against these viruses.
11:47Yes, people come and use them, because you know that in hospitals there are diseases,
11:53in hospitals there is nothing more than disease.
11:56Many do not want to protect themselves, because you know how we are Dominicans, we like to be given too much.
12:03So when they come and tell me, they are free, I say that you do not have, I give them to you.
12:08The one who cannot buy it, many do not want to spend the 10 pesos, I give them to them too.
12:13While the public health authorities of this province of Santiago have kept silent about this situation,
12:21the public health authorities, both public and private.
12:28Onelio Domínguez, Informativos, Teleantillas.
12:32And in the face of the current increase in cases of Sarampión, west of Texas,
12:37and the call of the Dominican Medical School to the population for Cuba to be vaccinated,
12:41with special emphasis on children who have not yet been immunized,
12:45the former Minister of Public Health, Bauta Rojas, spoke on the subject
12:50and warns that it can be a danger for the country.
12:53Meanwhile, the pediatrician gives some recommendations to the population.
12:59The former Minister of Public Health, Bauta Rojas, warned this Tuesday
13:03about the danger that the recent outbreak of Sarampión in Texas, United States represents for the Dominican Republic,
13:10which, he assured, occurs due to an anti-vaccine line
13:14that moves sectors in different countries for non-vaccination against various diseases.
13:21As a result of the COVID-19 pandemic, an anti-vaccine line was developed
13:30that still persists in various sectors of different countries,
13:36even in the United States now the new Secretary of Health is anti-vaccine.
13:41And this has led many people to question the vaccine.
13:45For this reason, Rojas calls on public health authorities
13:49to continue strengthening the immunization programs and campaigns against Sarampión in the country
13:56and also indicated that a law is necessary to promote vaccination in minors in an obligatory way.
14:05We eliminated polio, eradicated Sarampión, eradicated rubeola,
14:12but because there was adequate vaccination coverage that reached up to 95%.
14:19On his side, pediatrician Clemente Terrero understands that although Sarampión
14:24is an eradicated disease already in the country, it could be a health threat.
14:31So we consider that the population must keep their children vaccinated
14:39at the age that corresponds with the vaccine that corresponds
14:44and above all against this Sarampión that we have a threat in the region.
14:49The specialist cited some of the complications that Sarampión causes in unvaccinated children
14:57that could even trigger death.
15:01A large part, around 10% to 15% of cases can develop pneumonia, can develop otitis,
15:09can develop encephalitis, damage the brain.
15:14The local Department of Health Services of the United States reported 124 confirmed cases
15:21and a death due to the outbreak of Sarampión in Texas.
15:26Faced with these cases, the president of the Dominican Medical School, Waldo Arias Suero,
15:31called on the Dominican population to get vaccinated,
15:35emphasizing on the children who have not been immunized.
15:39Ana Mañón, Informativos, Celia Antillas.
15:43We make a short commercial break.
15:45You remember to follow us through all our digital platforms,
15:49such as at informativos.app.
15:51We are on Facebook, Instagram and YouTube.
15:57This Tuesday, the Centro Automobilista Tribunal postponed the hearing on March 13
16:02for the case of the death of 21-year-old Aida Nicole Reyes Gómez,
16:07which occurred in a traffic accident on February 26.
16:12Today's hearing was postponed until next Thursday at 9 a.m.
16:17because the court was not satisfied.
16:19Why was it not satisfied?
16:21Because yesterday the Public Prosecutor's Office refused.
16:23So they are waiting for their superior to send a new Public Prosecutor's Office.
16:28We are worried because the judge intimated the Public Prosecutor's Office
16:33to look for a substitute who could represent the state on Thursday.
16:40If not, the accusation will be dropped.
16:43In other words, he will order the freedom of the young woman.
16:46This Tuesday, a group of relatives and relatives of the victim's family
16:51appeared at the home of the motorist located on February 27,
16:56demanding justice for Nicole's death,
16:58as they are concerned that the person responsible for her death will be released.
17:03The defendant responds to the name of Raquel Guzman
17:06and was the person who caused the accident
17:08after crossing an intersection on Wingston Churchill Avenue
17:13with the traffic light in red
17:15and supposedly driving in a state of drunkenness at high speed.
17:21And there are still no arrests for the death of the first lieutenant of the police
17:25in Sabana Perdida, Santo Domingo Norte,
17:28at dawn on Sunday at the hands of criminals during a robbery.
17:33The authorities are in the investigation phase.
17:36At the time of arriving at this place, around 12 o'clock,
17:46and continuing with the information,
17:48hundreds of musicologists marched this Tuesday
17:52to the National Palace to defend their businesses
17:56and denounce the arbitrariness that the authorities commit
18:00when their teams are seized.
18:03They said they were on the brink of bankruptcy.
18:06Paola Baez expands the information in the following report.
18:10With banners that said,
18:13With banners that said,
18:19They marched from the Independence Park
18:21to the associations of the music industry,
18:23merchants and musicologists,
18:26rejecting the sonic pollution policy of the Interior and Police Ministry.
18:31Putting at risk tens of thousands of businesses
18:36and hundreds of thousands of quality jobs.
18:42In the outside world, the government says that this is a happy country,
18:46but here there is a constant robbery and permanent abuse
18:51against citizens for just having a little music.
18:56The business owners and teams assured
18:59that there are many robberies and abuse of power
19:02committed by the authorities against a sector
19:05that annually pays billions of pesos in taxes
19:08and demanded that they be created in areas of musical tolerance.
19:25More than 40 associations said they do not agree with the disorder,
19:30but they denounced that the police seized their equipment
19:33to the point of being turned off,
19:35that they are often lost
19:37and that when they manage to recover them,
19:39they impose fines of up to 300,000 pesos.
20:08The affected said that the arbitrariness they point out
20:13began in August 2024 with the new designations,
20:17so they asked for the intervention of President Luis Abinader.
20:21Paola Baez, Teleantillas News.
20:25Now we go to the border where residents of a community
20:28inhabited for more than 100 years in Dajabón
20:31are asking the authorities for the road pavement.
20:35Our correspondent Goydi Reyes has the details.
20:38Tired of the dust and the promises of the authorities,
20:43residents of the community of Mariano Cestero
20:46in the province of Dajabón
20:48mobilized to demand the road pavement.
20:54We are hoping that it does not rain now,
20:56because if it rains, we will not be able to get out.
21:00I have to tell you that we need this road
21:05to be fixed as much as possible.
21:08If it is possible for the government to intervene,
21:11let them intervene in this case.
21:13The community is waiting for it.
21:15Because the children who come from Barra de Vaca
21:18to the school of Mariano Cestero
21:20often have to go through the base of the bridge
21:23because when the bridge is full of water,
21:26the street is full of mud,
21:28everything is flooded to the school.
21:30That is why we want the street to be repaired.
21:33Of the authorities not to comply with the call of the protesters,
21:38they will continue their struggle
21:40until the road is paved.
21:43We are the ones who take care of the border.
21:45Look, I am a mother of seven
21:47and I only have one left with me.
21:52This is going to be yours.
21:54Please, Mr. President, we want the street.
21:57Not just dust.
21:58When it rains, look,
22:00there is no way for people to travel by motor or vehicle.
22:03Why?
22:04You are afraid of losing your life.
22:06Please.
22:07They only see us every four years.
22:09We want now, now,
22:11if there is no answer,
22:13in a month we will be here again,
22:15if God allows it.
22:16Goidis Reyes, Informativos Teleantillas.
22:22Organizations and people with affected relatives
22:25asked for more support from the state
22:28in the detection and treatment of rare diseases,
22:31pathologies that involve difficult and expensive processes.
22:35Paola Mateo reports.
22:37Well, there are many things.
22:39I would like to study astronomy.
22:42Although her muscular dystrophy associated with collagen OV1
22:46keeps her from walking and tracing her way to the stars,
22:49Valentina Leguizamon Ramirez dreams of being an astronaut.
22:53Astronomy and painting.
22:58Artistic.
23:00She is a bright girl on a cognitive level,
23:03very intelligent, she demonstrated in our conversation about her aspirations.
23:07In addition to walking, her condition implies a progressive loss of the strength of her muscles.
23:13And you paint now, right?
23:15Yes, frequently.
23:17How old are you?
23:1911 years old.
23:2011 years old.
23:21And your mom, when you look at your mom, what do you think?
23:26A strong woman.
23:31A fighter.
23:32Her mother spoke of how difficult it has been to deal with the diagnosis
23:36and symptoms since she was 3 years old.
23:39Life has changed, it has taken a turn.
23:42Because after you have a child, for example, in her condition,
23:45she was a normal girl.
23:47She walked, everything was normal.
23:50Receiving a diagnosis of rare diseases is a difficult goal to achieve
23:55for a person living in the Dominican Republic.
23:58From studies that are not carried out in the country,
24:00difficulty for a visa or even access to medication,
24:03according to those who are in this process.
24:06At the cost, the difficult access to health services,
24:09the lack of inclusion and the challenge of education are added.
24:13Do people and organizations say that this Friday
24:16they asked for more support from the state
24:18in the detection and treatment of these diseases?
24:21Dara is the first girl diagnosed in the Dominican Republic
24:24with the Pick Hockey syndrome.
24:27Rare diseases are those that are rare in the population in general.
24:32The statistics right now are in one out of every 2,000 patients.
24:38Although it is true, the law of social security
24:41is a law that does its function and has done a good job.
24:45But we have to make modifications to give coverage to many conditions.
24:49According to the Dominican Association of Patient Associations,
24:52children are the most affected
24:55and more than half of patients have motor, sensory or intellectual disabilities
25:00and 30% die before the age of 5.
25:04Paola Mateo Informativos, Teleantillas.
25:08And on the subject of rare diseases,
25:11we are pleased to welcome to our studios
25:14Denise Vallejo, President of the Dominican Association of Patient Associations,
25:21ADAPA, for its acronym.
25:23Welcome, Denise. Thank you for being here.
25:25Thank you for this space.
25:27For us, it is a pleasure that you receive us
25:29and that you listen to what rare diseases are.
25:33Thank you very much for really informing
25:36and educating our viewers a little.
25:39Because we hear about rare diseases,
25:42but for you as an association,
25:45how do you define rare diseases?
25:48How specifically is a disease classified as a rare disease?
25:54It is called rare because of its low prevalence.
25:57The definition does not come directly from ADAPA,
25:59but it is a global definition,
26:01which is a consensus that is not yet finished.
26:04Let's say it is the discussion of our daily bread,
26:08because at one point we talked about two patients of each kind.
26:12So each country, for example, the United States, Brazil and Europe,
26:16which are referents, handle different figures for the population.
26:20So the consensus is not necessarily totally defined,
26:26but we talk about rare when it is a very small group in the general population.
26:30That is the simplest way to understand it.
26:32Okay, so to see if I understand it.
26:35Let's see.
26:36Beyond the complexity of the disease or its characteristics,
26:42it is the number of people.
26:44That is the first.
26:46Then comes as additional,
26:50which is a condition that probably does not have treatment
26:54or they only have about 200 pathologies,
26:59we say close to 7,000 pathologies that have been described.
27:03There are few people who have it and it can be life-threatening.
27:08Okay.
27:09So, Denise, precisely on Friday,
27:12the day of rare diseases was celebrated.
27:15This is why the ADAPA Association
27:19is making this intention to highlight a precariousness that exists,
27:25which is that there is no legislative framework for these diseases in the country.
27:30What is precisely sought, what is sought with this legislative framework
27:34and how does it mainly affect these people,
27:38that is, diagnosed with these rare diseases,
27:41that non-existence of the Dominican Republic?
27:43I'll start a little behind you.
27:45What would ADAPA be?
27:46ADAPA is an alliance of patient associations,
27:48precisely as its name suggests,
27:50that we have joined because we are few
27:54and we need to make a bigger voice
27:56to be able to show and make these needs visible.
28:00World Rare Diseases Day is a campaign that is almost 20 years old.
28:04We adopted the international campaign to the national one
28:08to make that visibilization.
28:10You may have seen that several monuments in the world were illuminated
28:14and we in the country have managed to illuminate seven this year,
28:17which has been very beautiful.
28:19For example, I don't know if you've seen the Central Board,
28:21which was illuminated, and I said, not only was it illuminated,
28:24it put a press release in all the spaces to make it visible
28:29why they were illuminated.
28:31So, what is ADAPA?
28:33ADAPA seeks to work on public policies
28:36and this would be our public policy,
28:39which is the campaign that we launched this year,
28:41which is a law for the rare, which was the activity you saw on Friday.
28:45What would it change with a legislative framework?
28:48It does not change only for those who are diagnosed,
28:51it starts with those who are not diagnosed,
28:54so that they have access to an appropriate diagnosis,
28:58because these diseases, as they have such a complexity and such a reduced number,
29:03it is not the first diagnosis that you are going to rule out in a doctor.
29:08So, first, at the level of training,
29:10you are probably not trained for that diagnosis.
29:14Second, we would need a series of equipment
29:17or a series of tests that are expensive,
29:19that we do not have coverage either.
29:21So, a regulatory framework allows us to protect the citizen, not the patient,
29:27because it can affect us all.
29:29So, the ordinary citizen,
29:32to have the possibility that, given a health situation,
29:36can have an appropriate diagnosis,
29:38and then, eventually, a treatment,
29:41if the pathology has a specific treatment,
29:44and if not, alternative therapies,
29:47or the therapy that is available at that time,
29:50so that they can face that life situation with quality and dignity.
29:55Currently, what happens with a person diagnosed with a rare disease?
30:00I mean, we already saw what we want to achieve,
30:03which are all those actions that you, as an association,
30:07are trying to promote with this law.
30:10But, at present, what do we have?
30:12I mean, as a country, a child is diagnosed, for example,
30:15or an adult with a rare disease.
30:18How is it diagnosed?
30:20If we don't have the equipment,
30:23we don't even know what the disease is,
30:26we don't have the coverage.
30:28But, what happens to that patient
30:31so that people can understand it a little?
30:34Look, the reality is sad.
30:36Why?
30:38We can get to the diagnosis in several ways,
30:41but there is something that is statistically clear,
30:43and that is that there is a diagnosis delay of at least two years
30:47in many pathologies.
30:49There are pathologies that last nine years of diagnosis delay.
30:52So, let's start there.
30:54It is a family that, for years, has wandered
30:57from doctor to doctor, from treatment to treatment,
30:59looking for that answer.
31:01So, what happens to a family when it starts with a symptom?
31:05Well, you have to knock on doors, knock on doors.
31:08Each study increases the complexity,
31:11increases the cost.
31:13There is no coverage, neither by social security,
31:16nor by private insurers, for example, of genetic tests.
31:20Certainly, 100% is not genetic,
31:23but let's say there is an 80%
31:25that is going to have a genetic panel at some point.
31:28So, they look for private help.
31:32Within ADAPA we have what is Fundación María Laura,
31:35which, for the last 10 years,
31:37has delivered 186 diagnoses to families,
31:41molecular diagnoses to families,
31:43because they have approached, they have asked for help.
31:45Here we have the Robert Ricabral unit,
31:47which is working with rare diseases,
31:49just like Arturo Grullón,
31:51but in what a patient reaches,
31:54until a patient has a diagnosis,
31:56life is what is played in the middle,
31:59because there are some that we go against time,
32:02and that is why we are also promoting what is the neonatal TAMIS,
32:06which the law was enacted last year,
32:09because, at least, the TAMIS, the basic one,
32:13are seven pathologies.
32:14Of those seven pathologies,
32:16when the first 30 days of life are diagnosed,
32:18we are going to say that it is a treatment
32:20that is going to start in an appropriate way
32:22and it is a person who is going to prevent
32:24the disability or premature death.
32:26So, if we do not achieve it by TAMIS,
32:30because there are conditions that are not yet in TAMIS,
32:33neonatal,
32:34then we can achieve it by clinical diagnosis,
32:36molecular diagnosis.
32:38So, we do not have access right now,
32:41neither to one nor to the other.
32:43Good, Denise.
32:44To close,
32:45you, it is a beautiful action,
32:47how good that we have these associations
32:50and that they have come together,
32:52because we know that in the union there is strength,
32:54precisely.
32:55But to want, to wish,
32:58as you have already expressed it well,
33:00and above all,
33:01that law is needed,
33:03some legislators have already approached,
33:05some legislator has taken the flag
33:09and has said,
33:10I am going to raise my voice
33:11and this is going to be my project.
33:12We are a little,
33:13we are taking the steps for that,
33:15we are close.
33:16We are in the movement.
33:18In the previous legislation,
33:20we had the flag of Senator Farideh Raful,
33:23who worked very hand in hand with us
33:25and is still an unconditional ally of the Raras.
33:28At this moment,
33:29we have already finished a bill
33:31that is going to be deposited in the Chamber
33:33and we have not yet communicated
33:37who will be that legislator
33:39who will be flagged for the project
33:41and we hope to be able to communicate it
33:43in the next Congress,
33:45on Thursday 13,
33:46the first Dominican Congress on Rare Diseases,
33:48where we will be bringing these issues
33:50to the Dominican table for the first time,
33:52the role of the academy,
33:53of the alliances
33:54and above all,
33:55I always say,
33:56civil society,
33:57because we understand
33:58that this is a state issue,
33:59a government issue,
34:00a public health issue,
34:01certainly,
34:02but it is an issue for everyone,
34:04because it can affect us all
34:06and we all need to be able to echo this flag
34:10and that is why I also leave you here
34:12this button
34:13so that you can also be a flag
34:15of the Law for Rare Diseases
34:16and above all,
34:17that you open the conversation
34:18because there are many people
34:20who still do not know
34:21what a rare disease is.
34:22Indeed,
34:23so it is.
34:24Thank you very much, Denise.
34:25It is beautiful,
34:26this button
34:27and the graphic line
34:28calls a lot that union.
34:30Colors.
34:31Finally,
34:32make a call
34:33to our viewers
34:34so that those
34:35who also want to raise their voice,
34:37as they seek more information
34:39on social networks
34:40and others
34:41to also have this cause
34:45and advocate for it.
34:46Of course.
34:47You can find us
34:48on our website
34:49or on Instagram,
34:50which I think is the easiest
34:51to remember
34:52which is adapa.rd
34:53There we answer
34:54all the messages,
34:55we have patient groups
34:56where you can also contact us,
34:58we are informing
34:59about the next activities
35:01such as this first Dominican Congress
35:04that will sponsor
35:05the UAS
35:06next week
35:07and really my call
35:09will always be
35:10to civil society
35:11that we understand
35:12that this is an issue
35:13that can affect us all
35:14and that can touch us
35:15and even if it does not touch us,
35:16it needs our voice
35:17so that it can reach
35:18a different reality
35:19tomorrow.
35:20That's right, Denise.
35:21Thank you very much
35:22for being here.
35:23It is a beautiful job.
35:25How good
35:26that more people
35:27become eco
35:28and that initiatives
35:29are done
35:30to make this even more known.
35:32Friends, thank you very much.
35:34We will be back in just a few minutes.
35:36We are going to a short break.