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New Delhi, Sep 30, 2016: Patients suffering from Lysosomal Storage Disorders, or rare genetic diseases, organised a silent protest march to seek that the government frame a policy on the issue and allocate funds for their costly treatment, a release said.
Holding placards and banners to highlight their plight, over two dozen patients, and their caregivers participated in the march from Jantar Mantar to Connaught Place, organised by the Lysosomal Storage Disorders Support Society (LSDS).
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“Two committees have been formed this year to address the concerns of patients with rare diseases including LSDs but nothing concrete has emerged in terms of providing free treatment, the primary demand of patients and families,” said the release.
It said while the Delhi government formed a committee under the chairmanship of Dr. D K Tempe, Dean of Maulana Azad Medical College in February 2016 to develop a policy and funding for rare genetic diseases, another committee was constituted by the Union Health Ministry this year for developing a policy on providing medicines for treatment of rare diseases.
An awareness programme held after the walk witnessed a discussion on the ways and means of funding the treatment of rare genetic disorders.
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“Treatment for LSDs is beyond the reach of patients. Government support in terms of funding is imperative to help them lead a normal life. We urge the government to expedite the process of forming a policy and funding system for the treatment of LSDs without further delay so that patients get timely treatment,” said LSDS President Manjit Singh.
In Delhi, there are 14 known patients suffering from Gaucher disease, the most common form of LSD, said the release. The disease is an inherited genetic condition that causes fatty deposits to build up in organs and bones, as its sufferers do not have enough of an important enzyme (glucocerebrosidase) required to break down a certain type of fat molecule (glucocerebroside).
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Enzyme Replacement Therapy (ERT), the most effective treatment for LSDs, is available in India but most patients are deprived of receiving it due to the high cost. These treatments are not supported by government or insurance companies unlike in developed countries, the release said. (IANS)
An international team of astronomers has identified 366 new exoplanets, using data from the NASA Kepler Space Telescope's K2 mission.
The findings, described in a paper published in the Astronomical Journal, showed a planetary system that comprises a star and at least two gas giant planets, each roughly the size of Saturn and located unusually close to one another.
The discovery is significant because it's rare to find gas giants -- like Saturn in the solar system -- as close to their host star as they were in this case.
The researchers cannot yet explain why it occurred there, but it makes the finding especially useful because it could help scientists form a more accurate understanding of the parameters for how planets and planetary systems develop.
"The discovery of each new world provides a unique glimpse into the physics that play a role in planet formation," said lead author Jon Zink, a UCLA postdoctoral scholar.
The findings could be a significant step toward helping astronomers understand which types of stars are most likely to have planets orbiting them and what that indicates about the building blocks needed for successful planet formation, acoording to the study.
"We need to look at a wide range of stars, not just ones like our sun, to understand that," Zink said.
The term "exoplanets" is used to describe planets outside of the solar system. The number of exoplanets that have been identified by astronomers numbers fewer than 5,000 in all, so the identification of hundreds of new ones is a significant advance.
Kepler's original mission came to an unexpected end in 2013 when a mechanical failure left the spacecraft unable to precisely point at the patch of sky it had been observing for years.
But astronomers repurposed the telescope for a new mission known as K2, whose objective is to identify exoplanets near distant stars. Data from K2 is helping scientists understand how stars' location in the galaxy influences what kind of planets are able to form around them. (IANS/JB)
By Venkatachari Jagannathan
Officials of the Indian space sector, both serving and retired, are of the view that the space sector's organisational structure is expected to mirror that of India's atomic energy sector.
They also said that senior officials of the Indian space agency should address the employees on what is happening in the sector and how it will pan out so that uncertainty and confusion are addressed.
In the Indian atomic energy sector, the Department of Atomic Energy (DAE) is at the top, the Atomic Energy Regulatory Board (AERB) is the sectoral regulator while the Nuclear Power Corporation of India (NPCIL), the Bharatiya Nabhikiya Vidyut Nigam Ltd (both power companies), the Uranium Corporation of India Ltd, the Electronics Corporation of India Ltd, and IREL (India) Ltd are public sector units (PSU).
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The Bhabha Atomic Energy Centre (BARC), Indira Gandhi Centre for Atomic Research (IGCAR) are the premier research and development (R&D) organizations and there are several DAE-aided organizations.
While the DAE is headed by a Secretary (normally from the R&D units) who is also the head of the Atomic Energy Commission (AEC), the R&D centres and PSUs are headed by different persons.
Similarly, the government that has started the space sector reforms seems to be replicating the atomic energy model, several officials told IANS.
"The Central government's moves in the space sector seems to replicate the atomic energy model," an official told IANS.
Currently, the Department of Space (DOS) is at the top and below that, comes the private sector space regulator Indian National Space Promotion and Authorization Centre (IN-SPACe), the Indian Space Research Organization (ISRO) with various R&D-cum-production (rockets, satellites and others) units.
The sector has two PSUs - Antrix Corporation Ltd and NewSpace India Ltd.
Unlike the atomic energy sector, the Secretary of the DOS and Chairman of the Space Commission is also the Chairman of the ISRO.
As part of the space sector reform measures, the government has set up IN-SPACe as a regulator for the private sector players.
"Ultimately there will be only one sectoral regulator. There cannot be two regulators - one for the private sector and other for the public sector. Who will be the regulator if there is a company that is floated in public-private partnership," an official asked.
"It is good that there is a separate sectoral regulator outside of the DOS and the ISRO," an official said.
The recently-formed PSU NewSpace India has been mandated to build, own satellites, rockets and also provide space based services and transfer ISRO-developed technologies to others.
ISRO Chairman and Secretary DOS K.Sivan has been saying that ISRO will focus on high end research.
As a result, the positions of Secretary, DOS and Chairman, ISRO may not be held by the same person.
"Looking forward, there are possibilities of the government coming out with a voluntary retirement scheme for ISRO officials and merging its various production centres with NewSpace to synergise its operations," a former senior official of ISRO told IANS.
"But there is one issue in this proposition. For ISRO, the production centres are also its R&D centre. Both production and R&D are interwoven. One has to see how both will be separated to be housed under ISRO and NewSpace India."
Meanwhile, the minds of ISRO officials are filled with uncertainty and confusion about their future which is linked to that of their organization.
ISRO Staff Association General Secretary G.R.Pramod had told IANS that there is "uncertainty all around about the future of about 17,300 employees of ISRO".
"The ISRO top management that includes the Chairman and the Heads of various centres should come out openly and address the employee concerns at the earliest," an official added.
Space sector reforms are a much-needed move on the part of the government. | Unsplash
Also read: ISO: Achievements and History
According to officials, the uncertainty in the minds of ISRO officials is due to the communication from the government to freeze all recruitment as sectoral reforms are underway - allowing the private sector players in making and launching of satellites and rockets.
The ISRO officials also told IANS that promotions for several categories were kept on hold for the past two years. The promotion exercise for some has been carried out recently.
"Further the number of rocket launches this year from India came down drastically to just two from six or seven per year at an average. Out of two one critical mission for the country had failed," an official said.
However, the unanimous view is that the space sector reforms are a much-needed move on the part of the government so that the resources are used economically.
"For a long time, satellite utilization was an issue. Perhaps the satellites will be launched based on the demand from now onwards. The days of launching a satellite to utilize the rockets and then, searching for customers should be over," an official remarked.
Curiously, officials said all these years, ISRO had not approached its commercial arm Antrix to find out what the market needs so that it can build and launch such satellites.(IANS/PR)
Keywords: Atomic Energy, Satellite, ISRO, Department of Atomic Energy (DAE), DOS
Twitter has announced to ban sharing of private media, such as photos and videos, without permission from the individuals that are shown in those images.
The micro-blogging platform already covers explicit instances of abusive behaviour under its policies, the expansion of the policy will allow the platform to take action on media that is shared without any explicit abusive content, provided it's posted without the consent of the person depicted.
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"Sharing personal media, such as images or videos, can potentially violate a person's privacy, and may lead to emotional or physical harm," Twitter said in a blog post late on Tuesday.
"The misuse of private media can affect everyone, but can have a disproportionate effect on women, activists, dissidents, and members of minority communities. When we receive a report that a Tweet contains unauthorised private media, we will now take action in line with our range of enforcement options," the company informed.
Under the existing policy, publishing other people's private information, such as phone numbers, addresses, and IDs, is already not allowed on Twitter.
This includes threatening to expose private information or incentivising others to do so.
"There are growing concerns about the misuse of media and information that is not available elsewhere online as a tool to harass, intimidate, and reveal the identities of individuals," Twitter said.
When Twitter is notified by individuals depicted, or by an authorised representative, that they did not consent to having their private image or video shared, it removes it.
Twitter founder and CEO Jack Dorsey announced his resignation | Unsplash
Also read: Twitter to label Accounts of Government
This policy is not applicable to media featuring public figures or individuals when media and accompanying Tweet text are shared in the public interest or add value to public discourse.
The expansion of the policy came after Twitter founder and CEO Jack Dorsey announced his resignation, with Indian-origin CTO Parag Agrawal taking over the position.
Twitter in September rolled out a feature called Safety Mode that temporarily blocks certain accounts for seven days if they are found insulting users or repeatedly sending hateful remarks.
Keywords: Twitter, Feature, Private media, Permission