Lysosomal Storage Disorders Support Society—LSDSS

Est. in 2010, LSDSS is the first non-profit patient organization in India to bring the subject of rare diseases and LSDs to the forefront of policy discussion.

[Lysosomal Storage Disorders Support Society—LSDSS @LSDSSindia]

https://t.co/Y8npeiWVWR

A video from Pakistan, but highly relevant to India, where consanguinity rates reach 28% in some states. Cousin marriages significantly raise the risk of genetic disorders—40% of such patients visiting COEs in India have a family history of consanguinity.

[Lysosomal Storage Disorders Support Society—LSDSS @LSDSSindia]

Patients with #LSDs like #Gaucher deserve more than temporary relief. Effective treatments like ERT exist but need sustainable govt funding. No one should be left behind due to costs. #rarediseases #SustainableHealthcare #RighttoLife
@mohfw_india @jpnadda @narendramodi @PMOIndia

[Lysosomal Storage Disorders Support Society—LSDSS @LSDSSindia]

#consanguinity #matrimony #marriage #india #geneticdisorders #genetics #rarediseases #awareness #health @mohfw_india @jpnadda @icmrdelhi @ayushmanNHA @anupriyaspatel

[Lysosomal Storage Disorders Support Society—LSDSS @LSDSSindia]

Observance of International Rare Disease Day 2024 in collaboration with Kolkata Medical College and Hospital, Kolkata.

#rarediseases #awareness #health #rarediseaseday #lsdss #lysosomalstoragedisorders #LSDs #patientadvocacy #geneticdisorders @mohfw_india @mansukhmandviya

[Lysosomal Storage Disorders Support Society—LSDSS @LSDSSindia]

Observance of International Rare Disease Day 2024 in collaboration with #AIIMS Bhopal.

#rarediseases #awareness #health #rarediseaseday #lsdss #lysosomalstoragedisorders #LSDs #awareness #patientadvocacy

[Lysosomal Storage Disorders Support Society—LSDSS @LSDSSindia]

On Sept. 25th, LSDSS was pleased to be a part of the inauguration of the first ever helpdesk for rare disease patients set up at MAMC, New Delhi. The helpdesk has been set up under “Project Aastha,” a CSR initiative of Pfizer, implemented by Doctors For You.

[Lysosomal Storage Disorders Support Society—LSDSS @LSDSSindia]

#maharashtra #marathi #matrimony #marriage #consanguineous #consanguinity #geneticdisorders #raredisease #prevention #awareness

[Lysosomal Storage Disorders Support Society—LSDSS @LSDSSindia]

#marriage #matrimony #consanguineous #consanguinity #raredisease #telugu #telangana #andhrapradesh #prevention #awareness

[Lysosomal Storage Disorders Support Society—LSDSS @LSDSSindia]

@mansukhmandviya @OfficeOf_MM @NITIAayog @lavagarwal @national @AyushmanNHA @drspagarwal @thePHFI @sudarsannrs1962 @GovindJaiswal8

[Lysosomal Storage Disorders Support Society—LSDSS @LSDSSindia]

As per NFHS-5 by @mohfw_india, 11% of #marriages in India are #consanguineous, with the number being as high as 28% in some states. Such marriages considerably increase the risk of fatal #geneticdisorders such as #LSDs among newborns.

#consanguinity #matrimony #india #awareness

[Dr Jayesh J Sheth @jshethad1]

@DBTIndia @ICMRDELHI @LSDSSindia @gsbtm Happy to share our paper on 2 decades journey on research for lysosomal storage disorders in India from Biology to clinic in Lancet Regional Health. https://t.co/DxkQ3vpWpz

[Lysosomal Storage Disorders Support Society—LSDSS @LSDSSindia]

@OffCMCVellore @CMOTamilnadu @EPSTamilNadu @Vijayabaskarofl @mkstalin @DrSubair_Khan @MoHFW_INDIA @PMOIndia @narendramodi @rarediseasesind

[Lysosomal Storage Disorders Support Society—LSDSS @LSDSSindia]

#Doyouknow A whopping 28% #marriages in #Tamilnadu are #consanguineous, which is the highest in #india. Such marriages cause high prevalence of #geneticdisorders in this population, calling for #awareness initiatives from all stakeholders @nhm_tn @mansukhmandviya @subramanian_ma

[Lysosomal Storage Disorders Support Society—LSDSS @LSDSSindia]

Thirty Years of Humanitarian Aid for People with Rare Diseases https://t.co/aPlUA3et4y

[Lysosomal Storage Disorders Support Society—LSDSS @LSDSSindia]

#awareness #prevention #consanguinity #obstetrics #gynecology @fogsiofficial @NITIAayog #RareDisease #healthcare

[Lysosomal Storage Disorders Support Society—LSDSS @LSDSSindia]

As per the latest NFHS-5 by the @mohfw_india, 27% #marriages in the state of #Karnataka are #consanguineous, 2nd highest in India. Such marriages considerably increase the risk of fatal #geneticdisorders such as #LSDs among the new borns. #matrimony #kannada #karnataka #india

[Lysosomal Storage Disorders Support Society—LSDSS @LSDSSindia]

An insightful article highlighting the need to include rare disease patients from India in foreign drug development programs https://t.co/vJ0aykmAbX @lavagarwal @nitiaayog @mansukhmandviya @mohfw_india @cdsco_india_inf @icmrdelhi @dghsindia #orphandrugs #rarediseases #healthcare

[Lysosomal Storage Disorders Support Society—LSDSS @LSDSSindia]

Given the lack of govt and insurance support in India in accessing high-cost, life-saving treatment of LSDs, its important to focus on their prevention.

Know about what role Obst & Gyn play in the Prevention of LSDs https://t.co/EO4qLfIbS0

@fogsiofficial #obstetrics #gynecology

[Lysosomal Storage Disorders Support Society—LSDSS @LSDSSindia]

@drhrishikeshpai @MoHFW_INDIA @mansukhmandviya @OfficeOf_MM

[Lysosomal Storage Disorders Support Society—LSDSS @LSDSSindia]

#Didyouknow Consanguineous marriages, or marriages among cousins/blood relatives, are common in certain regions/communities of India and can cause increased risk of genetic disorders in newborns, warranting prenatal screening & genetic counseling of such couples. @fogsiofficial