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LSDSS ๐Ÿ‡ฎ๐Ÿ‡ณ
First & Leading Patient Advocacy group in India working to eliminate the challenges faced by Lysosomal Storage Disorders Patient and Families
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LSDSS ๐Ÿ‡ฎ๐Ÿ‡ณ 6h
Replying to @ashokmadanindia
PS: forget to mention. Novartis do not have any long term plans to register there product in India after completion of there clinical trials. As Novartis feels indian Market is not ready for such innovative drugs.
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LSDSS ๐Ÿ‡ฎ๐Ÿ‡ณ 6h
Replying to @ashokmadanindia
It can be a fair price for USA and European Countries where universal health coverage and govt. rembursement is widely available. But definitely not going to work for developing and under-developed countries.
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LSDSS ๐Ÿ‡ฎ๐Ÿ‡ณ retweeted
CheckRare 19h
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LSDSS ๐Ÿ‡ฎ๐Ÿ‡ณ 10h
Thanks for tagging
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LSDSS ๐Ÿ‡ฎ๐Ÿ‡ณ 23h
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LSDSS ๐Ÿ‡ฎ๐Ÿ‡ณ 23h
Replying to @curesmaindia
Indeed together we are stronger
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LSDSS ๐Ÿ‡ฎ๐Ÿ‡ณ 24h
We thank and everyone directly or indirectly helping or pushing clinical trials for in india. Clinical trials do save lives.
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LSDSS ๐Ÿ‡ฎ๐Ÿ‡ณ retweeted
biotech 2050 May 15
Unleash ZFN2.0 soonest for the benefit of MPS pediatric sufferers cc
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LSDSS ๐Ÿ‡ฎ๐Ÿ‡ณ May 18
Replying to @vijaychandru
Truly an inspirational story and a right track to treat patients at affordable prices. Recently PTC therapeutic started there clinical trials for DMD in india. Identifed 7-8 centres, unfortunately the cost of (Ataluren) drug is ยฃ220,256 per year per Patient in UK.
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LSDSS ๐Ÿ‡ฎ๐Ÿ‡ณ May 18
Indigenous research is the solution for treating patients with
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LSDSS ๐Ÿ‡ฎ๐Ÿ‡ณ May 17
Is this a reality of when drug pazopanib is covered, still Patient denied to get access. Request you to Please help this patient.
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LSDSS ๐Ÿ‡ฎ๐Ÿ‡ณ May 16
Replying to @Biotech2050
This is not yet available in india. Takeda-shire is now in process to register there Lysosomal Disorders products in india, so many be in near future this gets available too.
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LSDSS ๐Ÿ‡ฎ๐Ÿ‡ณ May 16
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LSDSS ๐Ÿ‡ฎ๐Ÿ‡ณ May 16
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LSDSS ๐Ÿ‡ฎ๐Ÿ‡ณ May 16
We salute to a dedication of prof. Chandru and opford Initiative toward rare diseases community.
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LSDSS ๐Ÿ‡ฎ๐Ÿ‡ณ retweeted
Vijay Chandru May 15
Hot off the press a publication by Strand scientists on genomic signatures of neurological disorders in Indian patients.
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LSDSS ๐Ÿ‡ฎ๐Ÿ‡ณ May 15
Replying to @SanofiGenzyme
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LSDSS ๐Ÿ‡ฎ๐Ÿ‡ณ May 15
Individuals with MPS II should be as active as possible to maintain joint function and improve their general health. However, competitive or contact sports should be avoided. Your childโ€™s doctor or physical therapist may be able to suggest ways of achieving this.
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LSDSS ๐Ÿ‡ฎ๐Ÿ‡ณ May 15
All families of affected individuals should seek further information from their genetics doctor or genetic counselor if they have questions about the risk for recurrence of the disease in their family or other questions related to inheritance of MPS diseases.
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LSDSS ๐Ÿ‡ฎ๐Ÿ‡ณ May 14
We have lot of cases were and on clinical trials for gaucher diseases, a type of rare genetic disorder and they doing really well. Clinical trials do save lives.
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