Rare Disease India @raredisease_in
70 million Indians suffer from #RareDiseases. #Genomics offers them a new #hope. guardian.meragenome.com Hindistan Joined April 2017-
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If you are a patient diagnosed with #Sjogrens Syndrome, Sign up for the #India Patient Support at rb.gy/rkxqij #autoimmune #Sjogrenssyndrome #awareness
The 2nd Edition of the Genomic Variant Analysis and Clinical Interpretation Course #GVACI 2021 Please share in your networks More information at: guardian.genomes.in
My talk today at the 5th Biennial Conference on Primary #Immunodeficiency Diseases youtu.be/cMvi7h6Jmm8
Genome Editing to Cure Hemoglobinopathies Prof Matt Porteus on Saturday 13th Feb 2021 . Register at hemoglobinopathies.genomes.in
Molecular characterization of the founder mutation (L444P in the glucocerebrosidase (GBA) gene) for Gaucher Disease is available on clinical referral guardian.genomes.in/refer-a-case
Personal #Genomes to Precision Medicine - Implications for Rare Genetic Diseases @SridharSivasub3 @CSIR_IND @IGIBSocial at #GVACI youtu.be/uzKoF0eDXrI
Persons with disabilities make up over 2% of the Indian population. While not all persons with disabilities are rare individuals, #rarediseases are chronic and can lead to major disability. 🎶sunoindia.in/1-in-20000/the…
Today is the International Day of Disabled Persons. Remembering Dr Mary Verghese, one of the pioneers of #PhysicalMedicine and #Rehabilitation in #India. en.wikipedia.org/wiki/Mary_Verg… #IDPWD2020 #IDPWD
Wonderful start to the Genomic Variant Analysis & Clinical Interpretation Course #GVACI . International participation with registrations from over 30 countries. More information at gvaci.genomes.in
#Alkaptonuria was amongst the first genetic disorders in humans that found to follow the principles of #Mendelian recessive inheritance. #RareDisease @DandaDebashish @IndianSjogrens @ORDIndia
How understanding ancient #DNA is helping Indians customise treatment for unique genetic diseases. Read in @TheWeekLive #genomes theweek.in/health/more/20… #indiangenome @CSIR_IND @IGIBSocial @shekhar_mande @vinodscaria @SridharSivasub3 @DrHVoffice @PrinSciAdvGoI @NirajRai3
Genomic Variant Analysis & Clinical Interpretation- An online course spanning 12 weeks, providing hands-on exposure to analysis and clinical interpretation of genomic variants. Please share for wider reach guardian.meragenome.com/news-updates/g…
1/n Very proud of the CSIR-IGIB team for this publication. Analysis of ~1000 healthy genomes is just the modest beginning. The project was conceived and completed in record 6 months. Congratulations @SridharSivasub3 and team. academic.oup.com/nar/advance-ar…
Seminars in #PediatricImmunology - an online educational series by luminaries on #PrimaryImmunodeficiency disorders. Register online at is.gd/pedimmune Please share in your networks.
The 19th International Conference on #Bioinformatics (InCoB 2020) will be held virtually from Nov 25-29, 2020 across Asia-Pacific and beyond. @APBioNetorg incob.apbionet.org/incob20
Parental Experience of Hematopoietic Stem Cell Transplantation for Children with #PrimaryImmunodeficiency Disorders in #Kerala , #India link.springer.com/article/10.100…
Vinod Scaria @vinodscaria
11K Followers 4K Following Scientist | Former Doctor | Passionate about Genomics in Clinical Medicine #Genomics4Everyone | Occassional #MysteryDisease tracker | Views are personal
CSIR-IGIB @IGIBSocial
16K Followers 273 Following CSIR-Institute of Genomics & Integrative Biology (IGIB) is a premier Institute engaged in research area of genomics, molecular medicine, bioinformatics etc
Debojyoti Chakraborty @Debojyoti_C
3K Followers 415 Following Devoted to Nikhil Banerjee and a little bit of CRISPR -views personal-
Anurag Agrawal @AnuragAgrawalMD
8K Followers 593 Following Physician scientist interested in lung health, emerging health tech, and AI. Dean, Biosciences and Health Research at Ashoka University. All tweets personal
RAHUL BHOYAR @RcBHOYAR
378 Followers 317 Following Scientist- #Genomics Ph.D. in Neuroscience #Rare Diseases#Next-Generation Sequencing
Arushi Batra @Arushi_Batra28
2K Followers 5K Following Program Manager: Digital Initiatives @IndiaBioscience | PhD Student @IGIBSocial | Intellectual disability 🧬 | Dancing, Writing , #scicomm #genomics enthu ❤️
Bani Jolly @bani_jolly
1K Followers 596 Following Scientist @karkinoshealth | Computer Science Engineer exploring the power of Genomics in healthcare
Shekhar Mande @shekhar_mande
27K Followers 940 Following Distinguished Prof Bioinformatics Centre, Savitribai Phule Pune Univ (formerly University of Pune), tweeting in personal capacity. Former Director General CSIR
Premas Life Sciences @PremasLifeSc
767 Followers 286 Following Bringing cutting-edge Lifescience technologies to India
Harsh Sheth @professor_gene
1K Followers 1K Following Husband | Son | Brother | Uncle | Scientist | Geek | Martial artist | Homo sapien | Tweeting in personal capacity | Assistant Professor at #FRIGE
Sridhar Sivasubbu @sridharsivasubb
2K Followers 2K Following Scientist, Passionate about improving human health by unlocking the power of the genome
yoni יוני @Primary_Immune
41K Followers 27K Following Human being. Jew. Israeli. Primary Immunodeficiency patient. הודו לה׳ כי טוב כי לעולם חסדו #Immunology #raredisease #ISRAEL
CSIR, India @CSIR_IND
146K Followers 455 Following CSIR is one of the largest and most diversified publicly funded scientific and industrial research organisation in the world.
Avantika Shrivastava @avshrivas
460 Followers 932 Following Strategic communications for social impact. Fmr Uni of Edinburgh scholar. Tweets on Rare Diseases, Disability, Welfare/Public Policy in India. Views personal.
SunoIndia @SunoIndia_in
6K Followers 2K Following A digital media (podcast only) platform for issues that matter. Download Suno India android and iOS app for free: https://t.co/tXNKFH0zUE
Anjali Bajaj @Anjali__Bajaj
533 Followers 518 Following PhD @IGIBSocial |CardiacChannelopathies |SuddenCardiacDeath |HumanGenomics|PrecisionMedicine|teaching,dancing,movies❤
CheckRare @CheckRare
3K Followers 2K Following Leading publisher and learning platform focused on rare diseases. Rare Diseases Are Our Focus, Expertise, and Passion.
Peer Med Zebra | Rare.. @peermedzebra
71 Followers 295 Following An initiative of @PeerMedicalFDN advocating for intersectionality in care for patients with Rare Diseases so that no one is left behind!
CGraceTweet @CGraceTweet
17 Followers 153 Following CEO, #ErdheimChesterDisease Global Alliance | #Caregiving Advocate | #Health Policy Nerd | Learning #RareDisease & #Histiocytosis | Resident Trekkie🖖🏳️🌈
PenelopeSophia @2j9dd4qgUTqVS
5 Followers 295 Following
GriseldaKelvin @jfS381h7M7w42p
10 Followers 356 Following
9nzz9qqcp2cvgwu @zbvxifsekfqwb
29 Followers 297 Following 【coinsrw . com 】User**me:Rom88 , P*****rd:R 66888 Bal:4,289,287,11 U.S.D.T
hzfvwvrf8wk9p3 @uagexhbad
2 Followers 315 Following If you want to make friends, you can contact me anytime TG：https://t.co/ig90wiXgWc
Congenital Hyperinsul.. @CHIA_India
14 Followers 119 Following
Laboratorios Larrasa @LacombeAng976
1 Followers 11 Following
luis francisco @luisfra15203685
78 Followers 554 Following Disvastigado de Esperantaj Eventoj, raraj malsanoj, blindulaj aktividajoj,socia teknologio #ODS17
Dhanya @Dhanya_K
19 Followers 203 Following
Agnès De Leersnyder @A_deleersnyder
371 Followers 840 Following CEO @Future4care Rejoignez-nous pour développer des solutions de #esanté concrètes et bâtir ensemble la santé digitale de demain. #Future4Care #startup #ehealth
RiO @Rio80970670
1K Followers 1K Following ひとりではたどり着けない就労へ#読書バリアフリー#Rare Disease/2011年に発病/指定難病222/障害福祉サービスを知る/やっとこプレ5mgとにかく疲れます。#落語家の話せる場所を増やしたい🤣Spotifyの playlistおせ〜て。
Krishna Vamsi Desina @ZoologicalBuff
649 Followers 987 Following Researcher 💚 Indian Council of Medical Research (ICMR) - TIGS🧬 #Lifesciences 🧑🔬✍️ nature & Wildlife Conservationist 💫 Team @urstrulymahesh 🙌
Barby Ingle Official @BarbyIngle
21K Followers 9K Following #AZ State Rep Candidate #LD7 |#PCRC D5, | #IAm #Writer #RareDisease #ChronicPain, #UniversalPetite, Creator of #NERVEmber | husband - @KenRayTaylor
bharathmdfoundation @bharathmdfound1
263 Followers 1K Following A Parent Advocacy Organisation of Muscular Dystrophy. NGO under Sec 8 of MCA 2013. Awareness, Approach , Assistance,Prevention, Management and Cure.
whatsuptweety @whatsuptweety
0 Followers 433 Following
Tracy B @TracyB1249888
76 Followers 85 Following
Tealel @Tealel117466
94 Followers 954 Following
Stisteys @stisteys77028
55 Followers 823 Following
Sanjay Modi @SanjayModi35294
2 Followers 39 Following
Rare Disease Advisor @RareDisease_Adv
5K Followers 1K Following Trusted knowledge base of practical information and resources focused on treating and diagnosing #RareDisease.
The Ectodermal Dyspla.. @EDSocietyUK
221 Followers 351 Following Our vision is that every individual and family affected by ED is equipped with the knowledge needed to manage ED effectively and live life to the full.
Saurabh Omer 🇮🇳 @saurabh_omer
8K Followers 2K Following Digital Media Practitioner, Marketing Tech Enthusiast, Social Media Influencer, Marketing Strategist Environment l Fight Against Climate Change & Air Pollution
Asociación Síndrome.. @PhelanMcDermid
2K Followers 1K Following Nuestra misión es mejorar la calidad de vida de las personas afectadas por el síndrome de Phelan-McDermid. 📲 Dona por Bizum: 02019
Rajiv @rajiv_bangalore
149 Followers 2K Following - Heading Design @xrlucidpvt - Co-Founder Hemophilia Society Bangalore Chapter - Volunteer @HemoIndia - Advocacy for #DEI, #RareDiseases, and #Climatechange
SPLIS @SPLIS_outreach
7 Followers 78 Following SPLIS is a rare genetic disorder causing patients to remain undiagnosed. Support our team to collect data on SPLIS and spread the word for a healthier future.
Tufan ka Deitya @TufanWalaDevta
17 Followers 58 Following
Varun Suresh @VarunSuresh007
654 Followers 2K Following Neurobiology of development and disease, Ph.D. @TIFR, #postdoc @LabNowakowski @UCSF, thinker, sports. (He/him). Opinions that are expressed are my own.
Anil kumar @VashapakaAnil
34 Followers 395 Following Research Scholar, Osmania University @osmania1917
shib sankar das @shib1618
6 Followers 80 Following
Cripples Unite @UniteCrips
15 Followers 397 Following
Gurpreet Kaur, PhD (s.. @gurpreet_bioin4
176 Followers 806 Following #WomenInSTEM | #Mom | #Bioinformatics #Genomics #DataScientist 🖥🧬@UABgenetics #RareDiseases #RareCancer | #R #DataVisualization #NetBio | #FulbrightAlum
IASCNAPA @iascnapa
147 Followers 260 Following International Association of Sickle Cell Nurses and Professional Associates
Bablu kumar @wet2drylab
354 Followers 2K Following PhD fellow @semm_it University of Milan,Italy @LaStatale| JVSRP-@NASAJPL | Metagenomics| Computational Biologist | Programmer |Python | ML | LINUX |
Vanessa Carter 🇬�.. @_FaceSA
8K Followers 8K Following #AntimicrobialResistance Patient Advocate • #OneHealth • Chair @WHO Taskforce of AMR Survivors • @AfricaCDC Civil Society Champion • Founder of @theAMRnarrative
Tom Wright @TWright_GenomeX
365 Followers 978 Following Manchester BRC PhD Candidate | Clinical Genetics Specialty Registrar OOP | Genomics | Rare Conditions | Mental Health | Husband | Dad | Family | Creative
It Happened To Me Pod.. @IHTMPodcast
18 Followers 70 Following A #raredisease and #medical challenges #podcast.
Anna Thomas @drthomasa
966 Followers 2K Following Doctor | Clinical Microbiologist |Patient Safety & Infection Control |
Maimuna Sali Paul @Maimuna_SP
107 Followers 222 Following Postdoctoral associate at Baylor College of Medicine @HTChaoLab | neurological disorders | disease gene discovery | rare diseases
The Neurogenetics Lab.. @IonSynapse
912 Followers 661 Following The Neurogenetics lab @UCLION led by Professor Henry Houlden is dedicated to discovering new genes and disease mechanisms linked to neurological disorders
Baketashitanrou @baketashitanrou
80 Followers 345 Following #pediatricneurologist #bioinformatics #iPSCs #RNAseq #Transcriptome #hypomyelination #raredisease #genetics #Englishlearner
Vinod Scaria @vinodscaria
11K Followers 4K Following Scientist | Former Doctor | Passionate about Genomics in Clinical Medicine #Genomics4Everyone | Occassional #MysteryDisease tracker | Views are personal
CSIR-IGIB @IGIBSocial
16K Followers 273 Following CSIR-Institute of Genomics & Integrative Biology (IGIB) is a premier Institute engaged in research area of genomics, molecular medicine, bioinformatics etc
Anurag Agrawal @AnuragAgrawalMD
8K Followers 593 Following Physician scientist interested in lung health, emerging health tech, and AI. Dean, Biosciences and Health Research at Ashoka University. All tweets personal
Bani Jolly @bani_jolly
1K Followers 596 Following Scientist @karkinoshealth | Computer Science Engineer exploring the power of Genomics in healthcare
Premas Life Sciences @PremasLifeSc
767 Followers 286 Following Bringing cutting-edge Lifescience technologies to India
Sridhar Sivasubbu @sridharsivasubb
2K Followers 2K Following Scientist, Passionate about improving human health by unlocking the power of the genome
yoni יוני @Primary_Immune
41K Followers 27K Following Human being. Jew. Israeli. Primary Immunodeficiency patient. הודו לה׳ כי טוב כי לעולם חסדו #Immunology #raredisease #ISRAEL
Department of Biotech.. @DBTIndia
105K Followers 266 Following The Department of Biotechnology, Ministry of Sc & Tech, Govt of India supports research, its applications and education in the Life Sciences and Biotechnology.
NORD @RareDiseases
41K Followers 3K Following National Organization for Rare Disorders (#NORD) is the voice of the #RareDisease community. Official US sponsor of #RareDiseaseDay.
CSIR, India @CSIR_IND
146K Followers 455 Following CSIR is one of the largest and most diversified publicly funded scientific and industrial research organisation in the world.
anil gupta @anilgb
14K Followers 1K Following #creativity #innovation by/for common people, shodhyatra, founder, #honeybeenetwork, sristi, gian, NIF, v fac iima, iitb, acsir, poet; #global #GIAN
EURORDIS-Rare Disease.. @eurordis
32K Followers 2K Following An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Rare Disease Day @rarediseaseday
44K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
DSTIndia @IndiaDST
184K Followers 663 Following DST, Govt of India, was established with the objective of promoting new areas, policies & programs related to Science & Technology and Innovation. https://t.co/7gCaHSN211
Thakur Foundation @thakurfdn
2K Followers 3 Following We are an independent funding organization that focuses on creating sustainable progress in the areas of Public Health and Civil Liberties.
Alliance Algérienne @aamrdz
64 Followers 250 Following réseau national d'associations des maladies rares,de groupes et des malades isolé
IAPO @IAPOvoice
4K Followers 2K Following A global alliance representing patients of all nations across all disease areas and promoting patient-centred healthcare across the world.
lizabora (she/her) @LIzaBora12
61 Followers 184 Following Clinical embryology| Sexual and repro health| Menstrual health| Pleasure Advocacy
Hear Your Song @HearYourSongHYS
294 Followers 1K Following Hear Your Song empowers kids with serious illnesses and complex health needs to make their voices heard through collaborative songwriting. Click for event tix!
CRMO Foundation @CRMOFoundation
369 Followers 180 Following Supporting CRMO patients by furthering the efforts of life-changing research, increasing access to resources and education and promoting awareness. #RareAsOne
ThinkGenetic, Inc. @ThinkGenetic
2K Followers 1K Following Finding individuals in need of a diagnosis. Supporting pharma, research institutions, and healthcare systems. #RareDisease #ai
Child Neurology Found.. @Child_Neurology
27K Followers 17K Following CNF is a national non-profit working through advocacy, research and education to ensure optimal care for children living w/neurologic conditions
National Health Porta.. @NHPINDIA
64K Followers 240 Following Ministry of Health and Family Welfare, Government of India has set up the National Health Portal for single point access of Health Information
penyakitlangkaIND @RarediseaseIND
15 Followers 0 Following
aHUS Alliance Action @aHUSAllianceAct
950 Followers 22 Following aHUS Global Action to Connect * Inform * Collaborate
PSR Orphan Experts (n.. @PSRorphan
5K Followers 3K Following We’ve moved! PSR Orphan Experts is now Ergomed. To stay updated on future news, please follow us on the Ergomed Twitter page at https://t.co/mWUAHD63Iq
Beyond the Diagnosis @BeyondtheDx
9K Followers 5K Following Beyond the Diagnosis unites art and science to inspire research and innovation of treatments for people living with rare and neglected diseases.
Rare Genomics @RareGenomics
10K Followers 3K Following RGI is a non-profit organization that provides research to families in need of diagnosis & treatment for rare genetic diseases.
Genetic Alliance @GeneticAlliance
24K Followers 2K Following A non-profit network transforming health through genetics. 🧬 We promote openness in health systems, advocacy, empowerment, informed decisions, and access.
Rare Diseases Clinica.. @rarediseasesnet
8K Followers 507 Following NIH-funded network fostering collaborative research among 20 teams of researchers, patients, and clinicians, each focused on a group of rare diseases.
ENCA @enca2002
688 Followers 612 Following ENCA is the European Network for Children with Arthritis and Autoinflammatory Diseases. Contact us: [email protected]
𝕆𝕙 𝕟𝕠, �.. @WallaceUofE
749 Followers 402 Following Politicians/Officials? Love software & IA. FT carer & LOUD Activist 4 #RareDisease patients/carers. https://t.co/oF1E9HTZOD; https://t.co/T7B3Hgecf4. Veteran
CRMO @Fight_CRMO
1K Followers 3K Following Information on chronic recurrent multifocal osteomyelitis (CRMO) and CNO from a patient advocate.
FMF & AID Global Asso.. @FMFandAID
365 Followers 353 Following The FMF (Familial Mediterranean Fever) & AID (autoinflammatory diseases) is a non-profit umbrella organization registered in Zurich, Switzerland.
CORD @raredisorders
5K Followers 731 Following CORD Mission: Provide a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders.#Canada4Rare
Medics4RareDiseases @M4RareDiseases
5K Followers 2K Following Medics4RareDiseases is driving an attitude change towards rare diseases amongst medical students and doctors in training #DareToThinkRare
RareConnect @RareConnect
19K Followers 5K Following 🌐Connecting #raredisease patients globally at https://t.co/v6rTTK0X6I. 💻Website help at @RareConnectSup.
VM @1amnerd
8K Followers 99 Following I don't unmix science and politics. Deputy science editor, @the_hindu: mukunth dot v at thehindu dot co dot in. Also on https://t.co/GGa5C0gECA.
ASDO-Rwanda @asdo_rwanda
616 Followers 757 Following We empower vulnerable populations to enhance their health, access education, embrace gender equality, and overcome injustice
Cambridge Rare Diseas.. @camraredisease
8K Followers 7K Following Improving #RareDisease lives. Creators of #RAREfest, #RAREsummit, Companies Forum & #UniqueFeetCam https://t.co/bWJ8DVF9iw
Rare Disease Review @RareDRev
2K Followers 290 Following The Medical Journal That Anyone Can Understand. Leader in #rarediseases & #knowledgetranslation. #zebrastrong
Sanath Ramesh @sanathkr_
2K Followers 1K Following Father of #RareDisease baby Raghav. Finding cure for GPX4 gene disorder 🧬 ; CEO @OpenTreatments_; Podcast https://t.co/hVuvGUSRtl Start. Pivot. Quit. Repeat
RDI @rarediseasesint
5K Followers 699 Following Rare Diseases International - the global alliance of rare disease patients & families
RARE-X @RARE_X_
1K Followers 208 Following PATIENTS' DATA POWERING PROGRESS - RARE-X is expected to become the largest data-sharing initiative focused on rare diseases. More to come.............
Mother of Sameer(Tahi.. @Tahira3390
563 Followers 1K Following Mother to an angel fighting the #BattleAgainstSMA in his memory| Android dev turned Teacher| Ahmadi muslim| Love for all, hatred for none| https://t.co/djzNLJKjy6
UnderCovid @Under_Covid
3K Followers 4K Following “Want to know what’s really going? So do we!”. | A people powered investigative & campaigning platform || | Exposing the scandals & Following the money. Join us
Claire Hastie 💙 @ClaireHastie1
5K Followers 626 Following Seeking rehab, research and recognition for people with #LongCovid | https://t.co/gsQHjeF7gB | @long_covid | https://t.co/ZE5JbihOKW | #FBLC
Long Covid SOS @LongCovidSOS
27K Followers 942 Following UK based charity advocating for those impacted by #LongCovid Recognition - Research - Rehabilitation Email [email protected]
Principal Scientific .. @PrinSciAdvGoI
82K Followers 1K Following Tweets are by Principal Scientific Adviser's communications team.
#AutoinflammatoryAwar.. @autoinflamaware
212 Followers 290 Following World Autoinflammatory Awareness Month September [email protected]
RarasNoInvisibles @NoInvisibles
54K Followers 8K Following Hablamos de salud, enfermedades raras, inclusion social y biomedicina. Escribe @Sombradoble Mas Información: [email protected]
Atypical HUS India @ahusindia
421 Followers 38 Following Providing support and information to Atypical Hemolytic Uremic Syndrome patients and family from India
Jeffrey Modell Founda.. @Info4PI
4K Followers 3K Following JMF is a global nonprofit dedicated to #PrimaryImmunodeficiency Advocacy, Research, Education, Newborn Screening & Genetic Sequencing to #CurePI worldwide 🌎
Rohit Bhatia @BhatiaRohit10
3K Followers 5K Following Science Policy/Open Science/IPR/Science Education Research.
DBT/WT India Alliance @India_Alliance
21K Followers 529 Following A public charity advancing #Discovery & #Innovation to improve #Health by funding research in Biomedical & Health Sciences. Funded by @DBTIndia & @wellcometrust
PregCovid Registry In.. @pregcovid
158 Followers 385 Following PregCovid is a study of pregnant & post-partum women with SARS-CoV-2 infection. Registry is open for all COVID-19 hospitals in India. https://t.co/fqEJjzPkTk
Roli Mathur (ICMR) @Mathur_Roli
1K Followers 540 Following Head, ICMR Bioethics Unit, Scientific Advisor, NAITIK Portal, Dept of Health Research, Member Secretary, ICMR-CECHR, Views personal [email protected]
Dinesh C Sharma @dineshcsharma
11K Followers 4K Following Columnist & author |Scholar-in-Residence @icggoa |📖: Indian Innovation,Not Jugaad https://t.co/VrJDnKtB49 | The Outsourcer :https://t.co/FigHk5qk3d
Vigyan Prasar @VigyanPrasar
23K Followers 124 Following Vigyan Prasar (VP) is an autonomous organisation of Department of Science and Technology, Government of India.
Julie Makani @juliemakani
10K Followers 7K Following Scientist|Doctor - Sickle Cell Disease. Biomedical Science in Africa. Health. Education. #Sicklecell Helpline 0769680688
Human Genome Org @humangenomeorg
29K Followers 92 Following The Human Genome Organisation (HUGO) is the international organisation of scientists involved in human genetic and genomic research.
BGvar: great tool for everyone interested in blood group immunogenetics. All data in one site! @mercy_rophina @vinodscaria bit.ly/3caK5dt #blood_groups
Personal genomes to populations - Experience from India | 29th March 2021 | Register now to listen to @vinodscaria!
The 2nd Edition of the Genomic Variant Analysis and Clinical Interpretation Course #GVACI 2021 Please share in your networks More information at: guardian.genomes.in
Sharing first fifty days #openaccess of our work. Hope you will enjoy reading it. @AcademicChatter @OpenAcademics @LochmullerLab @ICGNMD #neurology @MyastheniaOrg @RareDiseases @CheckOrphan @raredisease_in @ORDIndia @rarediseaseday @RareDiseasesnet authors.elsevier.com/a/1cdNA3tx7Lvg…
The number is yet to be decided for other countries. Our lack of insight has made them rare. #RareDiseaseDay #RareDiseaseDay2021 @RareDiseases @ORDIndia @rarediseaseuk @rarediseaseday @camraredisease @raredisease_in
Although #RareDiseaseDay is observed this weekend, our virtual Rare Disease Day at @NIH will take place on Monday, March 1! You can get ready by viewing the agenda and downloading our free event app on your phone or via a web browser: crowd.cc/s/3Y7F2 #RDDNIH
The life of a rare individual's parent is unlike anybody else’s. Mostly, parents are their children’s primary caregivers till late in the child’s life. This new ep by @avshrivas w/ Dr Suhas Indurkar discusses how she raised her son to be self-adequate. sunoindia.in/1-in-20000/wha…
@SunoIndia_in @avshrivas @shamy27 @thakurfdn @d_s_thakur @RareRevolutionM @raredisease_in @ourodyssey_ @ORDIndia @GlobalGenes @RareDiseaseLive Wonderful listening to another Parent discuss how they have faced the challenges. It definitely is a mind racking situation for a parent to decide on priorities. Episodes like these will definitely awaken at least a few in the society. And courage to others to face the challenges
My talk today at the 5th Biennial Conference on Primary #Immunodeficiency Diseases youtu.be/cMvi7h6Jmm8
Did you know? #RareDiseaseMonth #RareDiseaseDay #TogetherWeCan #CureMSD
Molecular characterization of the founder mutation (L444P in the glucocerebrosidase (GBA) gene) for Gaucher Disease is available on clinical referral guardian.genomes.in/refer-a-case
The Genome Clinic (RegNo.09142004) is an independent specialist health service provider dealing with all forms of genetic / genomic diseases & related health matters. Now providing genomic healthcare in India @raredisease_in @precisionmedcin @NHSgms #ApolloHospital #healthcare
@SunoIndia_in @avshrivas @Aroubakabir @d_s_thakur @thakurfdn @shamy27 @raredisease_in @RareRevolutionM @AnantBhan @RareShareOrg @ORDIndia Very interesting session. Adds more value when a person who has a Rare Disorder emphasizes the need for mental well being . Needs to be shared for creating an awareness on the prevalence of Rare conditions. @thisiszia
The #pandemic has thrown up serious uncertainties, it has also led to greater recognition of valuing each moment that life has to offer. This new ep of #RareLives by @avshrivas with @Aroubakabir delves into the hidden emotional costs of being rare. 🔗sunoindia.in/1-in-20000/bre…
@possiabilities @SunoIndia_in @avshrivas @Aroubakabir @d_s_thakur @thakurfdn @shamy27 @raredisease_in @RareRevolutionM @AnantBhan @RareShareOrg @ORDIndia Good advise to encourage persons to speak out. Rightly pointed out - acceptance is half the battle won. Happy to see the awareness being created. Congrats for another wonderful episode.
Since the #COVID19 began, the blood donation camps have stopped completely, this has played havoc in the lives of children with #thalassaemia. This new ep of #RareLives by @menrao delves into the impact of the pandemic on children with thalassaemia. 🔗sunoindia.in/1-in-20000/que…
Personal #Genomes to Precision Medicine - Implications for Rare Genetic Diseases @SridharSivasub3 @CSIR_IND @IGIBSocial at #GVACI youtu.be/uzKoF0eDXrI
@SunoIndia_in @raredisease_in @RareShareOrg @AnantBhan @thakurfdn @d_s_thakur @ORDIndia @Prasannashirol @GlobalGenes @RareDiseases @eurordis @GlobalGenes @PatientWorthy @rarelikeher @lilannalaurent @Srotberg15 @_OurOdyssey_ @RareRevolutionM my dear friend @avshrivas has run this podcast series on #RareDisease in India. Please do like, share and engage. :) <3
Persons with disabilities make up over 2% of the Indian population. While not all persons with disabilities are rare individuals, #rarediseases are chronic and can lead to major disability. 🎶sunoindia.in/1-in-20000/the…
Today is the International Day of Disabled Persons. Remembering Dr Mary Verghese, one of the pioneers of #PhysicalMedicine and #Rehabilitation in #India. en.wikipedia.org/wiki/Mary_Verg… #IDPWD2020 #IDPWD
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