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Year -2021
21November 2021
Inborn error of metabolism day
organized Seminar and webinar with IEM support trust and ORD INDIA at Kolkata At Conclave 216, Acharya Jagadish Chandra Bose road the key speakers were Dr Ratna puri ,Dr Arun Mangalik ,Dr Bikramjit Das ,Dr Sanjukta Das , Dr Dipanjana Datta , 38 people along with 8 parent present in seminar and 56 people well attended the webinar.
15 November 2021
Participated in Advocacy meet organized by NNF India, in collaboration with UNICEF, IAP & FOGI, is organizing Newborn Week Advocacy Day at Hotel Pride Plaza, Aerocity, New Delhi .
Participated in Webinar on Vital Pillar of Rare Diseases Policy and Enhancing Standards of Care Organized by US India Foundation and PerkinElmer India
20th oct 2021
Participated in India Rare Disease Summit virtual event focused on
- NBS Policy and Global Perspectives
- Opinion on National Rare Disease Policy in India 2021
30 September
Participated in webinar on Focused on Inborn Errors of Metabolism Organized by Azzurra Pharma
26 September
participated as a Panelists with Dr. Rohit Carriapa, Dr. Neerja Gupta, Dr. Milind Shah on The way
forward (Newborn Screening: Towards a Uniform Screening
NATIONAL NEWBORN SCREENING SYMPOSIUM organized by National Neonatal Forum India (NNFI)
25th September
participated in webinar INDO GERMAN METABOLIC MEET 2021 organized by Kasturba Medical Collage Manipal
7th September 2021
Organized Webinar on Healthy Children with lions clubs and ORDI, Keynote
Speaker were Dr Rajesh Pathak, Dr Satyendra Katewa , Dr Swati Ghate And Dr Sharad Sharma All from Jaipur.
8th September 2021
Participated and support New-born Screening Advocacy Meeting organized and supported by NNF INDIA,UNICEF, WHO,GOI, ISPAT,ISOPARD, ICT , USAID.
24th July 2021
Organized webinar with Lion Clubs Jaipur on Healthy Children Healthy Nation and focused on Child hood cancer and new born Screening and Speakers Were Dr Satyendra Katewa from Manipal Hospital and Dr Rajesh Pathak from Narayan Hridalaya Jaipur.
5th july -2021
Participated in webinar on Indian contribution to disease gene discovery organized by SGPGI in memory
of Late Dr SS Agarwal .
3rd July -2021
Participated in Webinar on 6th Annual International Conference of the Board of Genetic Counseling
17th June 2021
Participated in Webinar on Neonatal testing for rare diseases_The power of knowing
https://view6.workcast.net/register?cpak=1001330958038291&referrer=Blast3&et_rid=79832673&et_cid=3809113
29th May 2021
Participated ORDI - AOCN Webinar Series - Session 6 Linking Phenotypes to Diagnosis,
22 May 2021
Participated in webinar on Thalessemia ,organized by Indian Dietetic Association Jaipur Chapter
Speaker were Dr Rajiv Kumar Bansal & Surbhi Pareek – (Dietician and Nutritionist)
15th May 2021
Participated ORDI - AOCN Webinar Mitochondrial Diseases Session 4
8th May 2021
Participated ORDI-AOCN Webinar on Metabolic Epileptic Encephalopathies.
28th Feb -2021
1-Participated Global Rare Disease Conference (GRDC) 2021, an initiative by People to People Health Foundation and co-hosted by Niti Aayog
2- This year we observed Rare Disease Day
आज दुर्लभ रोग का प्रतीक दिवस है
आओ मिल कर शपथ उठायें
इन रोगों की जागरुकता फैलाये
जनजन तक अपनी बात पहुंचाये
कई चेहरो पर मुस्कराहट बिखरायें
कश्ती रहती है हमेशा भंवर में
आओ मिल कर किनारे पहुंचाये
At Seth Anandi Lal Poddar Institute Of Deaf Dumb (सेठ आनंदी लाल पोद्दार मूक बधिर संस्थान)
Special education school in Jaipur, Rajasthan
Jawahar lal Nehru Road,Near Trimuriti circle, Jaipur, Rajasthan 302004
merdindia foundation gave for 60 children ,Bed sheet, drawing box, Dal and sugar,and fruits and biscuits
21st Feb-2021
Participated News x television show as a webinar Rare Disease Indian Scenario.
https://youtube.com/playlist?list=PLDPE5u-MQ9P57eSNYf0Jnnp7rnm9VPiRH
20th Feb -2021
Participated Virtual CME on LSDs in South Asia: challenges and priorities and Webinar Speaker DrAshok Vellodi Former
Consultant Paediatrician, Metabolic Unit GOSH.
22 Jan -2021
Participated North Region rare Diseases Consultation-2021(blue print in India)
https://regionalrarediseaseconsultations.puertevisual.com/register/PPHF/NX5E5HMFS3LZGP0ZCQ6AAJ7MQ/
Year - 2020
Webinars
December 2020
20 December 2020
Organized webinar with Lion Club Jaipur Adarsh Nagar on Healthy Children and covered 0 to 18 year
children problems like fever , Infection , migraines , cold , cough,pneumonia. skin infections ,ear Infections, and throat infections (strep throat). and more Key Speakers Were Dr Deepak Shivpuri and Dr Sourabh Sing .
4th Dec 2020
Participated in Webinar NEUROLOGICAL DISORDER GENETICS AND MICROBIOME PERSPECTIVE,
Speakers was Dr Manisha Goyal,Dr Pawan Gupta and Dr SK Chikara .
Noveber 2020
25 Nov 2020
Participated in ORDI Webinar On Global Garrod Day, panel of Experts Speakers were Dr. Sumita Danda,Dr.Sandhya P,Dr. Joe Thomas, Dr. Tamil Selvam,Dr. Isaac Jebaraj Moderator was Dr Debashish Danda
21 nov 2020
MERD India along with IEM Charitable Support Trust Organized Inborn Errors of metabolism Day by webinr, Dr Anil Jalan, Dr Anupam Sibal , Dr Rohit Cariappa, Dr Chaitanya Datar , Dr Priyanshu Mathur, Mrs. Geetanjali Kunte Dietitian was the key Speakers , over 100 .people well attend the webinar.
October 2020
15th Oct
Participated IndoUSrare Webinar - Rare Disease Patients Engagement with FDA In this introductory webinar, guest speaker was James Valentine, JD, MHS, Attorney at Hyman Phelps McNamara
25 October
Participated Indian Rett syndrome foundation webinar focused om musical Therapy
26 October
Participated IAP webinar UNDERSTANDING THE IEM ALGORITHM Speaker was Dr Anil Jalan
September 2020
27 Sep
Organized webinar with Indian Rett Syndrome Foundation and IEM SUPPORT charitable Trust Beyond Medicine
and Diet for Rare Diseases like IEM and RETT Syndrome need for Physiotherapy/ Occupational therapy and
Behaviour/ Psychological needs of our children - key Speakers Were Dr Shashi Ranjan (Loknayak Hospital)and Ms Auroba Kabir (Enso Wellness)
25 sep
Participated Rare Disease Clinical Research: Challenges and Solutions to conduct studies in rare disease indications organized by ORDI
Speaker was Dr Ali Smyth
20th Sep
Organized Webinar with IEM Support Charitable Trust,on the experiences of the parents, your views and your ups and downs while taking care of your children .
18th Sep
Participated in Webinar Clinical Trials for Rare Diseases:What Patients and Caregivers Need to KnowSpeakers:Capt. Smitha Naidu & Ms. Swetha Pradhan
6th Sep
Pariticipated in IAPTCB 44th scheduled Zoom webinar onBasic Approach to IEM in Children and Newborns by Dr. Anil jalan, Senior Consultant Pediatrican, Mumbai.Moderator: Dr.Prajnya Ranganath, Associate Professor & HOD of Genetics, NIMS.
5th Sep ,
Participated in ORDI Care For Rare Webinar Battling for Genetic Counseling The Promises and the Perils Speaker: Dr. Dipanjana Datta
August-2020
14th Aug,
Participated in the Webinar Newborn Screening for Obstetricians: Awareness to Implementation - Part 3
July-2020
24th July, Participated in the Webinar Newborn Screening for Obstetricians: Awareness to Implementation - Part 2
11th July, participated IEM MIMICING GENETIC PROBLEMS &GENETIC SCREENING where speakers were Dr Anil Jalan and Dr Tejal Rishbud from Mumbai.
11th July, participated webinar on Implementing Newborn Screening in Clinical Practice :Are we utilizing the full potential?Where Speakers were Dr Chaitanya Datar and Vaishali Madkaikar from Pune.
July11th,participated ORDI care for rare Webinar on Newborn Screening in Sick Newborns ,Speaker was Dr Shamik Ghosh from Kolkatta .
July 2nd, Participated BGC India 5th Annual Conference 2020: Genomics to Mankind – Integrating Genetic Education, Counseling and Public Health .
July 3rd, participated ORDI Care For Rare Webinar on Newborn Screening where the chief
Guest was Dr. Arvind Shenoy, a renowned Paediatrician in Bengaluru associated with Cloud9 Hospital.
July 3rd participated in the webinar- Newborn Screening for Obstetricians: Awareness to Implementation
as a panelist, other panelist was Dr Ashish Mehta , Dr Darshan Wadekar and moderate by Dr Saurabh Dani .
Lucknow- Participated and Support Rare disease Day Organized by the department of Medical Genetics,
Sanjay Gandhi Postgraduate Institute of Medical Sciences, at Telemedicine hall, SGPGIMS on 29 Feb 2020
Bangalore- Participated and Support Rare disease Awareness Race Organized by Organization For Rare
Disease India (ORDI)on 22 Feb 2020
Pune- Participated and Support Rare disease Awareness Race Organized by Organization For Rare Disease
India (ORDI)on 16 Feb 2020
Jaipur-Participated on workshop and awareness program on Rare disease and LSD organized by Lysosomal Storage Disorders Support Society (LSDSS) and Santokba Durlabhji Memorial Hospital (SDMH) Jaipur on 25 Jan 2020 AT auditorium SDMH .
New Delhi - Participated- Foundation Ceremony of MISSION NEEV(Neonatal Early Evaluation Vision ) at Auditorium , Maulana Azad Medical College On 6 January,2020
Year-2019
Nagpur-Organized IEM DAY with support by Nelson Mother and Child Care Hospital , NNF , IAP, on
24th NOV 2019 at Hotel Hardeo.
Jaipur-Observed Inborn Errors of Metabolism Day with Jaipur parents on 21st November at Hotel park
Regent
New Delhi- participated seminar of Rett syndrome , Organized by Indian Rett Syndrome Foundation at
Safdarjung Hospital Ansari Nagar East, Near to AIIMS Metro Station.
Jaipur-Organized Health awareness program under Service week of lion club at Eternal Hospital on 5 October 2019
Jaipur-Organized Newborn screening awareness program at C.k Birla Hospital on 25 September 2019
VARANASI-Participeted as a Panelist in ISAR ISPAT CONCLAVE( Newborn screening Session) at Hotel Taj Ganges on 21 september 2019 .
Indore-Organized Awarenness program with Choitram hospital& Research Centre , IAP Indore , IEM supoort charitable trust on 1st sep 2019 at auditorium Choitram hospital& Research Centre.
Hyderabad-Participated NeuroPedicon-2019 conference (workshop on Management of Neurometabolic Disorders) at Hotel Park Hyatt on 26 july 2019.
New Delhi - Participated RGAL (Rare Global Advocacy Leaders ) Meeting on 16th April 2019 @ Four point Sheraton.
New Delhi -Participated as a panelist on Seventh International Conference on Rare and Undiagnosed Diseases for Session 4 Role of Patients group – Awareness and Education on day 1, April 13th 2019 at Hotel Leela Ambience, Ambience Island, National Highway, Gurugram Delhi NCR, India.
jaipur -participated On the occasion of World Autism Awareness Day 2 april, special children from different institutions on Albert Hall gave handsome presentations. In order to bring awareness of autism, this program was organized by the Department of Archeology and Museum, Rajasthan Government in collaboration with the D-Naj Institute.
New delhi - Participated Rare Disease Awareness RUN/WALK RACE FOUR 7 AT IGIB OKHLA on 17 march 2019
Bikaner- MERDINDIA organized with IAP bikaner , lion club Jaipur adarsh nagar and lion clubs bikaner and IEM support Charitable Trusts unique symbolic mass awareness March for rare disease on 3rd march 2019 from Bhraman Path Sadul Ganj Rd, Shardul Colony, Bikaner, , More than 100 people participated for Awareness.
Jaipur -MERDINDIA support World Rare disease day by organized with lion calub jaipur adarsh nagar unique symbolic Race for 7 a mass awareness run/walk on 28 Feb 2019 at the Jawahar Circle Garden, Jaipur, Rajasthan, More than 70 people well attended and run/walk for Awareness.
Pune- Participated as panelists for a panel discussion on "Care for Rare" during ISIEM 2019 on 19 jan 2019
Year-2018
New delhi -Organized With Division of Genetics, Department of Paediatrics, All India Institute of Medical Sciences, New Delhi & IEM Support Charitable Trust, New Delhi on Saturday,15 December 2018 at All India Institute of Medical Science, New Delhi .
Ahmedabad- Organized with FRIGE Institute of Genetics,IAP ahmedabad AND aop ahmedabad CME on Inborn Errors of Metabolism-2018 ON on 9dec 2018 sunday at AMA (Ahmedabad Management Association.
Jaipur -Organized 4th IEM day on 21 November 2017 at golden tulip hotel with press conference.
Bangalore -Awareness programme for Rett Syndrome on 14th October, 2018 at NIMHANS.
Jaipur-Organized Awareness Program for Rare Disease in Children in association with Surya Hospital Jaipur and Lion Club Adarsh Nagar on 6 October 2018 at Surya Hospital Jaipur.
jaipur-Organized Newborn Screening Awareness Program in association with MAHATMA GANDHI MEDICAL COLLEGE & HOSPITAL and LION CLUB ADARSH NAGAR JAIPUR ON 2nd September 2018 .
Jaipur-Participated 4th Annual CME Pediatric Gastroenterology, Hepatology & Nutrition at MG Hospital Jaipur on 22 July 2018
AjmerOrganized CME with IAP, FOGSI , JLN Ajmer RARE DISORDERS /WE CARE FOR RARE on30 June 2018 at HOTELCROSS LANE .
Patna-Participated FOGSI ISPAT Conference on Genetics & Foetal Medicine to be held at Hotel Lemontree Premier, on 17th June 2018.
Jaipur-Host and organized 3rd National Patients Advocacy Group Leader Meeting (PAG Meeting) called by ORDI (Organization for Rare Disease India)on 29th April 2018 to discussed National Rare disease policy
Jaipur-MERDINDIA support World Rare disease day by organized unique symbolic Race for 7 a mass awareness run/walk on 25 Feb 2018 at Shivaji Park Vijay path Tilak Nagar, Jaipur, Rajasthan, More than 100 people well attented and run/walk for Awareness.
Bangalore -MERDINDIA support World Rare disease by Participated Race for 7 a mass awareness run/walk on 25 Feb 2018 http://racefor7.com/
Year-2017
participated
.Lucknow-ACBICON 2017 conference on 4th December 2017 at Scientific Convention Centre,King Georges Medical University.
New Delhi- IEM Awareness program of north zone (Delhi- NCR, Rajasthan, UP , Punjab, Haryana) on 28 October 2017 at India Habitat Centre , Diet 4 Life is the project started by Food Safety Standards Authority of India, Government of India
Bengaluru- Newborn Screening Symposium-2017 on 29 October at hotel The Grand Magrath
New Delhi -FSSAI event to mark World Food Day 2017National Conclave on Nutrition Security: Partnership & Convergence at FDA Bhawan, New Delhi on October 16th 2017.
Manipal-Indo- German Metabolic Meet on 24th of September, 2017, at Dr. TMA Pai Hall.
Pune-INBORN ERRORS OF METABOLISM -SIMPLIFIED FOR PRACTICE AT Deenanath Mangeshkar
Hospital on 16 September 2017
Jaipur- 9th Ped Gastro Update,CME at Auditorium SDMH On 16th July 2017
New Delhi-PAG meeting to discuss National Policy For Treatment of Rare Disease at The united service institution of India on 8th July 2017
New Delhi -National initiative for Rare diseases Consultation Meeting at India international Centre on 27 April 2017
New Delhi-Inaugural Ceremony of IEM a unique collaborative initiative with Medical fraternity, Food Safety and Standards Authority of India, Nutritionists/ Dietitians and Industry to make available special diets for children suffering from Inborn Errors of Metabolism (IEM).on 12th April, 2017 at India Habitat Center.
Navi Mumbai - CME on Newborn Screening adding Quality; changing Lives on 2nd April 2017
New Delhi- Participated and support 1st Saved Babies Day in India at Auditorium Maulana Azad Medical College on 28 March 2017.
Ahmedabad -Participated The Rare Disease Day 2017 slogan Join us in making the voice of rare diseases heard on 26th February 2017at Ahmedabad Management Association Ahmedabad, organized by FRIGEs Institute of Human Genetics and Academy of Pediatrics Gujarat Branch.
Bangalore- Participated and support Race for 7: Race for 7 is an awareness run organized by Organization For Rare Disease India (ORDI) on 26 Feb 2017.
New Delhi -Meeting on Evolving Policies For Cure Of Rare Diseases At Jawaharlal Nehru University on 23 February 2017
Chennai-IV National Conference of the Indian Society of Inborn Errors in Metabolism on 12 Feb 2017
Bangalore-54th National Conference of Indian Academy of Pediatrics (PEDICON 2017) on January 21 2017
Surat- CME ON Genetic Applications in Clinical Practice on 8th January 2017 at Taj Gateway.
New Delhi-13th Biennial National Congress Hosted by ISPAT Delhi Chapter At Constitutional Club of India On 15 Jan 2017.
MERDindia has organized, Sponsored, Supported .......
New Delhi -Organized 3rd IEM Awareness day and 2nd Saved Babies Day Association
with Maulana Azad Medical College Delhi and IEM Support Charitable Trust Delhi on
21 November 2017.
Bikaner-Organized CME with IAP Bikaner on new born screening and inborn errors of
metabolism in Indian perspective on 23rd July 2017
Varanasi-Participated & sponsored CME ON INBORN ERROR OF METABOLISM at Conference
Hall, New Pediatric Building, Department of Pediatrics, IMS-BHU on 26 March 2017.
Jaipur -Celebrate Rare Diseases Day at Hotel Lords Plaza on 27 Feb 2017
Year-2016
Pune-Participated and support SYMPOSIUM organized by IAP- Pune INBORN ERRORS OF METABOLISM-A CLINICAL APPROACH at Bharati Hospital Auditorium on Sunday, 27th November 2016
Jaipur - Organized 2nd IEM DAY symposium association with Neo Clinic Jaipur and Lions Club Jaipur,on 20 November 2016.
New Delhi.Awareness meet for Rett Syndrome at Ram Manohar Lohia Hospital Baba Kharak Singh Marg.on 16 Oct 2016
Noida- CME on Inborn Errors of Metabolism (IEMs)AND Newborn Screening on 15 September-2016 at Jaypee Hospital Sector-128, Wish Town, Gautam Buddh Nagar, Noida, Uttar Pradesh.
Hyderabad-Newborn Screening Symposium-2016 at Golkonda Hotel, Banjara Hills on September 11. 2016
Vadodara-Organized CME in association with The M.S.University of Baroda,with K.G children hospital Vadodara, Gujarat, INDIA on Inborn Errors of Metabolism (IEMs): AND NewBorn Screening on 10 September-2016atThe M. S. University of Baroda, Pratapgunj, Vadodara, Gujarat.
Ahmadabad -CME on Metabolic Disorders at Zydus Hospital Nr. Sola Bridge, S.G. Highway,on 10 July 2016
Jaipur-Organized CME in association with Narayana Hrudayalaya Hospital, on 29 June 2016,at Narayana Hrudayalaya Hospital.
Kota - Organized CME in association with IAP and FOGSI, kota on 22 may 2016,with the theme.METABOLIC DISORDERS IN CHILDREN - CREATING PUBLIC AWARENESS - ROLE OF DOCTORS
Jaipur- Participated & sponsored Thalassemia Day, orgnized by SEAIT, Prem Niketan Hospital, Jaipur On 8th May2016 at Auditorium Manav Seva Sangh, Ashram Marg, Jawahar Circle, Jaipur
Jaipur- Workshop on Pediatric Gastro Interventions at MG Hospital on 24 April 2016
Mumbai- CME on All about of Inborn Error of metabolism, organized by We Are Special - An initiative of Shubhlahari Prathisthan at Sir H.N. Reliance Foundation Hospital and Research Centre on 27 March 2016
Jaipur-Celebrate Rare Diseases day on 29 Feb2016 Monday at Rajasthan Netraheen Kalyan Sangh .
Bangalore- Participated and support Race for 7: Race for 7 is an awareness run organized by Organization For Rare Disease India (ORDI) on 28 Feb 2016
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