Lysosomal Storage Disorders Support Society—LSDSS

youtube.com/watch?v=FBLU0Y… 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.

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

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

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

Observance of International Rare Disease Day 2024 in collaboration with #AIIMS Bhopal. #rarediseases #awareness #health #rarediseaseday #lsdss #lysosomalstoragedisorders #LSDs #awareness #patientadvocacy

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.

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

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

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

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

@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. thelancet.com/journals/lanse…

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

#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

Thirty Years of Humanitarian Aid for People with Rare Diseases medicine.yale.edu/news-article/t…

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

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

An insightful article highlighting the need to include rare disease patients from India in foreign drug development programs timesofindia.indiatimes.com/blogs/voices/n… @lavagarwal @nitiaayog @mansukhmandviya @mohfw_india @cdsco_india_inf @icmrdelhi @dghsindia #orphandrugs #rarediseases #healthcare

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 youtu.be/nvvTn3Hnrc0 @fogsiofficial #obstetrics #gynecology

@drhrishikeshpai @MoHFW_INDIA @mansukhmandviya @OfficeOf_MM

#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