Top Tweets for #ALSCareAndSupport
Our annual newsletter - Key updates of 2023
https://t.co/BWoeQI9whX
#als #ALSCareAndSupport #endALS #rarediseases #motorneuronedisease #neurology #HomeICU #criticalcare #ventilatorSupport #IAMALS #pmoindia #nitiaayog #nirmalasitharaman #ministryofhealth #ministry
We bring our newsletter for the first half of the year 2023: *A Ray of Hope*
please access the newsletter via below link
https://t.co/CNkKOej05D
Join RACE FOR 7 at AIIMS (All India Institute of Medical Sciences, New Delhi) tomorrow!
What better way to start your Sunday than participating in the Race for a Cause…
Details shared below…
#alscas #ALSCareAndSupport #ordi #ordindia #mnd #racefor7 #rarediseaseday #aiims
Meet and Greet!
Privileged to have meeting with Dr RK Dhamija, Director IHBAS at CSOI for his support for ALS community.
Thank you sir, for your support and guidance for ALS Community!
#ALSCareAndSupport #endALS #rarediseases #motorneuronedisease #neurology #HomeICU
Meeting with Dr Mukesh Gautam, Scientist, Department of Neurology Northwestern University Feinberg School of Medicine.
This meeting helped us a lot with moving forward on our discussions for #ALS advocacy.
#ALSCareAndSupport #endALS #motorneuronedisease #drugdiscovery
We are glad to have been a part of the Rare Disease Day Celebration at AIIMS, Delhi on 28th February, 2023.
#policy #policymakers #rarediseaseday #india #aiimsdelhi #mamc #ordi #ordindia #icareforrare #racefor7 #patients #advocacy #ALSCareAndSupport #endALS #motorneuronedisease
With great pleasure,we bring to you our 1st annual newsletter.
A ray of hope💫
Please have a glimpse and read it at -
https://t.co/N6jmxFWn98
#als
#iamals #ALSCareAndSupport #endALS
On National Day today-raising ALS community Nationwide voice from India!
Our documentary of ALS community offers deep insight
https://t.co/HrSA8LNdGj
This video is not just about the science of struggle but it is about the science of love #als
#iamals #ALSCareAndSupport #endALS
ALS still fighting to get its place in rare disease policy despite so many efforts as PALS life can be extended by many years with such support. But the policy implementation at ground level must happen for existing rare disease in policy #alscareandsupport #alscas #PMOIndia
Thank You Modiji forHistoric National Policy for RareDiseases in India. Much needed Hope to neglected RareDiseases Community. We are awaiting the Policy implementation at ground level, kindly intervene to expedite the treatment as we are losing precious lives every passing day
Reflections 2022 -
It has been a privilege to have received the Limca book of records certificate in March 2022 (deferred) for ‘home care for Amyotrophic lateral sclerosis (ALS)’ #als #MND #neurology #limcarecord #endAls #EverythingALS #raredisease #ALSCareAndSupport #iamals
Reflections: Year 2022
We represented the ALS community at the 1st National Rare Diseases Research Summit
(REDRESS - 2022) by @ORDIndia(ORDI) and @TIGS_India Tata Institute for
Genetics and Society.
#als #mnd #ALSCareAndSupport #endALS
#research
#iamALS
Reflections: Year 2022
We had a fruitful discussion with Neelima Karath,Leader-Strategy from Azim Premji Foundation highlighting how big a challenge (physically, emotionally and financially ) is to live with ALS
#als #MND #EverythingALS #raredisease #ALSCareAndSupport #iamals
Reflections: Year 2022
Our engagement with project @_Makeityours resulted in suggestion of creation for a national database of all patients in INDIA with
genetic sequencing
#als #MND #clinicaltrials #neurology #genetics #EverythingALS #raredisease #ALSCareAndSupport #iamals
Reflections: Year 2022
In our virtual meeting with renowned Dr. Mukesh Gautam,he suggested us to set up ALS clinics in which he will extend his guidance.
#als #MND #clinicaltrials #neurology #genetics #moleculardiagnostics #EverythingALS #raredisease #ALSCareAndSupport #iamals
Reflection: Year 2022
Our major collaboration CSIR Institute of Genomics and Integrative Biology for ALS research/investigation
for initiating genetic testing for over 60 PALS
#Research #ALS #neurology #genetics #EverythingALS #raredisease #neurodegeneration #ALSCareAndSupport
Dr. @JaisonVineeth speaking at Neurons Ki Aawaz - ALS session part of the Conference organised Indian association of Neurology. #ALSCareAndSupport
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