patient advocacy meet 2019.

#Icare4rare #areyouawareofrarediseases

ORDIndia AG Multiple Sclerosis Society of India LSDSS 🇮🇳 @SanofiGenzyme SAAR FOUNDATION

Team work

ORDIndia India Patients Multiple Sclerosis Society of India LSDSS 🇮🇳 SAAR FOUNDATION Shankar Subramanian

LSDSS 🇮🇳 RarasNoInvisibles MPS Society UK, here for those with rare diseases Kendall Davis, MPH Anant Bhan ISCR Soumya Swaminathan Randeep D RDI Ministry of Health Narendra Modi Hitesh.my son is affected with mps2 .Hunter Disease syndrome. We know to Live in this condition with without treatment. This condition is very sensitive condition.

Inaugural Function LSDSS-2019

Takeda Pharmaceutical NORD Cure SMA Foundation of India 🇮🇳 ICMR ORDIndia
LSDSS 🇮🇳 NITI Aayog Ministry of Health ETHealthWorld Roche PMO India
#raredisease #raredisease awareness #togetherforrare

Lets join together & aim to raise awareness of the rare, genetic mucopolysaccharidoses (MPS) diseases.
#MPSAwarenessDay , MPS Society UK, here for those with rare diseases, LSDSS 🇮🇳

Today is a special day #rarediseaseday2020 as we raise awareness for #RareDiseases through LSDSS 🇮🇳 ORDIndia @SanofiGenzyme

We are a bigger stronger team now.

#RareDisease
#AreYouAwareOfRareDiseases
#Icareforrare

ORDIndia LSDSS 🇮🇳 India Patients Multiple Sclerosis Society of India Shankar Subramanian SAAR FOUNDATION

Please share and promote your members journey LSDSS 🇮🇳 ORDIndia

ORDIndia LSDSS 🇮🇳 and Cure SMA Foundation of India 🇮🇳 great work to educate and aware #RareDisease

Exciting annual event for the rare disease community! Registration open!
globalgenes.org/global-genes-l…
Encourage all member organizations to register! Global Genes IPSPI India International Rett Syndrome Foundation Cure VCP Disease LSDSS 🇮🇳 #ppmdindia Snyder-Robinson Foundation @sfcomms EDS awareness page Defeat MSA Alliance CSNK2A1 Foundation

Our round-table on 'Rising Cost of Life Saving Medicines in India' held yesterday in Gurgaon was well attended. Those who attended included doctors, pharmacists, healthcare activists, heads of medical device companies, lawyers and patients.

LSDSS 🇮🇳 @hvgoenk Pavan Choudary

𝗥𝗮𝗿𝗲 𝗗𝗶𝘀𝗲𝗮𝘀𝗲 𝗪𝗲𝗲𝗸 𝟮𝟬𝟮𝟭 - Save the Date

#RareDiseases #RareDiseaseDay2021 #OpenData

ARDSI India ARDSI Indiahyd Down Syndrome Federation of India Fragile X Society-India Genetic Alliance @HemophiliaHfi LSDSS 🇮🇳 ORDIndia Rare Diseases India Retina India Sjogren's Syndrome India Thalassemics India

Acc. to policy #haemophilia is a RD. I want ask Ministry of Health Dr Harsh Vardhan (Modi Ka Pariwar) through which scheme of GOI. 450+ Crore annually is been spent on the treatment of haemophilia. Why other RD's Is not getting a fair share from that funding?
LSDSS 🇮🇳 Siddhartha D. Kashyap

Rare Diseases IORD is having this meeting right now on 'Need for Essential Medicines for Rare Diseases' without any of the rare disease groups on the panel, but with a manel of pharma associations representatives.
ORDIndia Cure SMA Foundation of India 🇮🇳 LSDSS 🇮🇳 CDSCO_INDIA_INFO NITI Aayog World Without GNE Myopathy (WWGM)

Great news from Emily de los Reyes at the #WORLDSymposium
presenting efficacy and safety good results of a single-dose AAV9-CLN6 #Batten disease gene in variant late infantile neuronal ceroid #lipofuscinosis at 12 and 24 months.
#GeneTherapy #LSDSS #lysosomal #RareDisease

Pl follow LSDSS 🇮🇳 it is the first and leading patients support group in India working to eliminate the challenges faced by patients and families with Lysosomal Storage Disorders. To know more, pl visit facebook.com/LSDSS/ and lsdss.org

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.

IndoUSrare Reena Kartha Nara Govindarajan Global Genes RARE-X NORD EveryLife Foundation Patient Worthy RDI Cure VCP Disease Neuromuscular Disease Foundation Fsma.India LSDSS 🇮🇳 @lsdssorg IPSPI India @ppmdindia Snyder-Robinson Foundation Remember The Girls Neuromuscular Disease Foundation Radhika Dhamija, MD, FACMG 🧬🧠👶 International Rett Syndrome Foundation @Wishes4Elliott

Salute to 90 year Mr Dattatreya for #RareDiseases awareness - wish you live long and keep inspiring Cure SMA Foundation of India 🇮🇳 LSDSS 🇮🇳 ORDIndia India Patients Prasanna Shirol Shashank Tyagi