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Year-2024
September is newborn screening awareness month
18th September 2024
Continue campaign for healthy children healthy nation On Newborn Screening awareness month, we visited manu hospital, Sevayatan hospital, CKS and Manipal hospital jaipur, Thanks to Dr Shabnam,Dr Vandana garg,Dr Jyotika Singh, Dr Mohit Sharma and Dr Manisha Gupta for kind support.
17th September 2024
We visited SDMH, rungta and Hope hospital jaipur and distributed Posters and discussed about Healthy Children Healthy Nation to 14 doctors and happy to meet Dr S fayyaz from SDMH, thank to All respected doctors for support Dr Fayyaz Sahab,Dr Brinder Jeet Kaur,Dr Kusum Kalla,Dr Brijesh Yadav,Dr Anupam Chaturvedi,Dr Mini Bhargava,Dr Gunjan Agarwal,Dr Ashwini Gupta,Dr Prashant Mitharwal,Dr Kandla Sharma,Dr Anubhuti Bhardwaj and Dr Romit Jain.
16th September 2024
Continue campaign for healthy children healthy nation distributed poster on Newborn Screening, brest feeding and Kangaroo care at Forties, EHCC and Rajasthan hospital along with lion club jaipur Adarsh nagar, Thank you to Dr Poonam Upadhyay, Dr richa Vaishnav, Dr Savita Bansal, Dr sunila Khandelwal, Dr shaloo khakar, Dr Sharad Sharma, Dr Shyam sunder Sharma, Dr Veena Acharya, dr Shilpee Gupta, Dr Priyanka Gupta, Dr deep Khandelwal.
14th September 2024
On Newborn Screening awareness month we courier 482 Posters on Healthy Children Healthy Nation to jaipur gynecologist and Obstetrician Clinics with logo of Benifit of brest feeding, importance of Kangaroo care and Universal newborn screening.
10th September 2024
Distributed 20000 pamphlets on Healthy Children Healthy Nation at jaipur newspapers eg Rajasthan patrika, Danik Bhaskar, Times of India to promote Newborn Screening, Breastfeeding,Kangaroo care, it was very unique activity with lion club jaipur Adarsh nagar.
4th September 2024
we merdindia foundation along with lion club jaipur Adarsh nagar distributed poster on Healthy Children Healthy Nation at Surya Hospital Jaipur to not only gynecologist and Obstetrician but also child care doctors,
Thanks to Dr Anju tali, Dr Deepak Shivpuri, Dr Alok Tyagi, Dr Vibha Chaturvedi, Dr natwar Parwal, Dr Rakesh Sharma.
25th August
Participated in health awareness program focused on cardiac and endocrinology ,organized by lions clubs Jaipur Centre spine and jaipur friend ,key speakers were from Narayana Hrudayalaya Dr Ankit Mathur and Abhinav Gupta.
24th july
Participated and moderate awareness seminar at Manipal hospital jaipur and topic was child hood cancer and adult cancer,organized by lion club Centre spine and few other Organization, key speakers were Dr Rohit Shukla and Dr Rohit jain.
2nd July
Participated in webinar focused on Framework for Ayurgenomics in Rare Diseases, organized by IndoUSrare and key speaker was Dr. Manoj Nesari from the Ministry of Ayush, India. Dr mitali Mukherjee from IIT Jodhpur AcSIR, and Dr Seema Kapoor of Maulana Azad Medical College,and Dr. Reena Kartha from IndoUSrare leads the discussion. more then 70 people well attended the webinar
23rd June
Bharuch- organized seminar on Healthy Children Healthy Nation and newborn screening at Rotri club Bharuch support by Rotarian Club and IMA Bharuch around 50 peoples well attended the seminar.
1st June
Amritsar- Participated as a speaker on fogsi conference and give views on Newborn Screening/need to Hour, organized by fogsi with Annual update at Hotel Radisson blue, over 100 gynecologist and Obstetrician were well and the conference.
Organized walk for Awareness for rare diseases and Newborn screening in Radisson blue hotel with unique Tree 🌳 पौधारोपण,
Excellent support by conference organized chairperson Dr narendra Malhotra l
26th may
Ahmedabad-Participated in CME focused on Genetics testing, Newborn screening and HPV Vaccination, organized by Indian Society of prenatal diagnosis and therapy and Ahmedabad gynecologist and Obstetrician society, key speakers were Dr Uday Pai, Dr Saurabh Dani, dr Alpesh Patel, dr Phagun Shah,at Dreams icon panchvati Ahmedabad.
19th may
Agra-organized Healthy Children Healthy Nation seminar along with IEM support Charitable Trust host by Ujala Cygnus Rainbow Hospital Agra and support by IMA, meta, Smriti, AGOS, around 50 people well attended the seminar.
15th May
Participated in webinar on Focused on mps diseases Awareness with panel discussion moderate by Dr sanjeeva, panelist were Dr Kaushik Mandal, Dr girish Katta, Dr Rajat Chopra, Dr Aditya Gupta, Dr Suman Gupta And Mr Manjeet Singh, opening remarks by Dr Ratna puri and closing remarks by Dr Sunita Bijarnia, over 90 people well attended the webinar. The key comments by patient Mr Sumair.
13th May
Participated in webinar on NIPS (Non-Invasive Prenatal Screening): The Use and the Misuse
key speakers were Dr. Prof. Narendra Malhotra and Dr. Veronica Arora.
8th may
Thalassemia Day
Jaipur-Participated in Thalessemia day program organized by south East Asia institute of thalassemia and Mg hospital jaipur at Auditorium Mg hospital jaipur.
25th &26 April
Bengaluru-Participated in DNA Day celebration, Rare Star Awards ceremony, and the Patient Advocacy Group Meeting Organized by Organization For Rare Disease India ,in Rare Star Awards ceremony around 200 people well attended the program and in Advocacy meet around 21 parents Advocacy Group Participated l
2nd April
Jaipur- Participated in awareness program on autism awareness day Organized by लिनेज स्वयंसिद्धा, Seth Nanu ram Nanki Devi Health and Education society and support foundation for Autism and development Disabilities.
30th March
Coimbatore - Participated in seminar as a speaker on Challenges and Bottlenecks in Genetic Counseling
Education/Training in India at Hotel gokulam park , over 100 Genetics Counselors well attended the
seminar, Organized by Board of Genetic Counseling India.
3rd march
Jaipur-organized unique symbolic Rare Disease Awareness Posters gallery at Kalaneri Art Gallery Jawahar
Lal Nehru Marg,display 100 rare diseases Posters, over 115 people well visited the Awareness gallery,
wonderful support by Organization For rare disease and other many parents Advocacy Group from India .
28th February
Jaipur - Observed rare diseases day at Nirmal Vivek Special children school with magic show, over 100 Spacial children includes school Management was enjoyed the show ,8 members and 3 children also Participated.
25th February
Kozhikode- Participated race for rare diseases Awareness at kozhikode beach freedom square, organized by Organization For Rare Disease India, over 100 people well attended the run 🏃♂️.
11th February
Bikaner-organized seminar on Healthy Children Healthy Nation along with lions clubs bikaner and Jaipur Adarsh Nagar, IAP bikaner at lion Hall, key speakers were Dr Shyam agarwal ,Dr Priyanshu Mathur, Dr Vijay Laxmi Vyas, more than 75 people well attended the seminar.
24th January
Participated in ISHG-2024 and attented Newborn Screening Session and rare disease policy in India Session at J B Auditorium at Ahmedabad Management Association.
17th January
Participated in webinar organized by Akums Pharma regarding the rare disease Drugs to be taken forward, few other support groups also Participated
9th January
Panjim Goa- Participated Purple fest at goa panjim and topic
Invisible to visible Disabilities, organized by Anubha ji and team from cronic pain India and key guest was health minister of Goa shri Subhash Pai Desai ,more than 80 people well attended the program.
Year 2023
19th December
Jaipur -We distributed 60 New woolens clothes at jklon hospital jaipur, great support by MS Dr Kailash meena and HOD Dr kusum devpura and team.
1st December 2023
Ratnagiri Maharashtra
Organized seminar along with IMA ratnagiri on newborn screening awareness and well attented by ober 40 doctors ,
key speaker was Dr Heme purendra.
2nd December 2023
Sindhudurg Maharashtra
Organized seminar on Newborn Screening awareness along with IMA and fogsi and well attented by over 50 doctors, seminar wkey speaker was Dr Hemea Purendra.
23rd November
Participated As a stakeholder and Speakers on Rare Genetic Disease Research Summit-2023 (REDRESS- 2023) organized by ORDI, TGI and ICMR at inStem Building, NCBS Campus, GKVK post, Bellary Road, Bengaluru
19th November 2023
Inborn errors of metabolism day (21st November)
Merdindia foundation along with department of Pediatrics devision in Medical Genetics jipmer pondicherry support by IEM support Charitable Trust Organized IEM day at jipmer pondicherry mini Auditorium,
More than 80 people well attended the program We focused to sensitization of Medical students ,
It was great successful seminar and all cradit goes to Dr reena Gulati and her team,
Key speaker were Dr kuldeep singh from Jodhpur along with Dr Adhishivam ,great blessings by Dr Vikram kate, and Dr Thapa,
It was best IEM day observed since 2011
Thank you jipmer pondicherry for support
6th October
Jaipur-Organized activity along with lion club jaipur Adarsh nagar on service week
Distributed 15 Nutrition kit and drawing combo kit to suffering child hood cancer children and unique magic 🎩 show ,
Excellent support by Dr lalit Mohan Sharma and Team.
September marks on Newborn screening awareness month
29th September
Bhopal- organized Newborn Screening awareness seminar along with AIIMS bhopal support by IEM support Charitable Trusts,loin clubs bhopal district 3233 G-2 ,Jeevan deepti society, over 100 people well attended the seminar, venue was Auditorium AIIMS bhopal, key speakers were AIIMS Director bhopal, Dr Shikha malik, Dr Bhavna Dhingra, lion jp Johar, Shri Anil khare, Ms sarika modi, merdindia foundation parents ketan Pradhanand Gajanan udder.
19th September
Continue campaign for healthy children healthy nation On Newborn Screening awareness month September,we done round Table Discussions with c k Birla Hospital jaipur, meeting organized by our member Ashutosh ji Basotia, and useful Discussions by all respected doctors about importance of newborn screening.
16th September
Organized awareness programme along with IEM support Charitable Trusts at Yashoda hospital and Research Centre Ghaziabad, it was great seminar and well attented by 60 people, key speakers were, Dr Seema Kapoor, Dr Surender Singh Bisht, Dr Ranjana Mishra, Dr Alpana, Dr Aprana Tyagi, Dr Ashish parkash, and unique play by Mr Sagar Kharbanda and Team, seminar moderate by ms sarika modi.
8th September
we disturubeted awareness Posters at j k loan hospital, mg hospital and Narayana hospital, thank you to Dr kusum devpura and team , Dr sudir Sachdeva, Dr Saurabh Singh, Dr Munish kakar, Dr lalit Mohan Sharma, Dr rajesh Pathak and Team
In this awareness week we covered 28 child care centers includes more than 50 doctors
Hopefully we are in right way to create awareness among doctors, Policy makers and Parents
7th September
in series of campaign for newborn screening and child hood cancer month along with lion club Jaipur Adarsh nagar we distributed 14 nutrition kit for cancer suffering children in BMCRC and distributed poster in manipal hospital . thanks to
jairam ji ,deepti ji and team , Dr aruna jain and dr Rahul for support .
6th September
Continues campaign for newborn screening month we visited Mahila Chikitsalaya Sanganeri Gate and Dr Atul child care hospital jaipur and distributed awareness Posters, Great support by Dr Ramesh Choudary, Dr sunil gothwal and Dr varnit Shankar.
5th September
Continues campaign for newborn screening awareness program and visited child Care Clinic, mg children hospital, jklon hospital, gangori hospital, janana hospital all in Jaipur, great learning experience.
4th September
Continue of our observing Newborn Screening awareness month, we visited, Hope,cocoon,and cradle hospital ,
Excellent support and guidance by Dr joyti patodia, Dr jagveer Singh and Dr manish Mittal
2ndSeptember
Distributed awareness Posters for NewbornScreening awareness and Child hood Cancer awareness at KMS hospital, Uniyara hospital, Forties hospital, EHCC hospital, neo Clinic children hospital all at jaipur, wonderful support by Dr kuldeep Mohan, Dr Sanjay kulshraht,Dr satyen, Dr Sanjay Choudary, Dr Vivek Gupta, Dr SD SHARMA, Dr jai krishn Mittal.
1st September
Jaipur-distributed awareness Posters at Baby lon hospital, neoton CDC, Surya Hospital, SDMH, wonderful support by
Dr DhananjayMangal. Swati Ghate, Dr sitaraman, Dr Deepak Shivpuri, Dr natwar, Dr Rajiv Bansal.
15th August 2023
Participated 🇮🇳 day at Kolkata with special children, organized by IPSW, lion club Kolkata and support by many other Organization, unique program organized by IPSW, lion club Kolkata south and other Organizations, more than 200 people along with many children well attended the program, Dr Madhulika Kabra and Dr Dipanjana Datta was also present.
6th August-2023
Organized awareness program along with lions club jaipur Adarsh Healthy Eyes focused on eyes problem, more than 70 people well attended the program, Dr Anil Matai was the key Speaker.
22ND July
Bhopal- Pariticipated in international conference and wor shop organized by VNS group of institutions and south Asian College SAC-ACCP at bhopal Radisson
5th July 2023
Participated in webinar
Topic: Dr SS Agarwal Memorial Lecture
Genome test invitation /A Miracle,
Chief guest was Professor R.k. Dhiman and guest speaker was Dr Madhulika Kabra, organized by department of Medical Genetics SGPGI Dr Subha Phadke and Team.
13th June 2023
New Delhi-Participated in workshop 9n National Policy For Rare Diseases At India international Centre, key person were
Dr swasticharan from government of India, Dr Pramod Kumar, Dr Neerja Gupta from AIIMS, Dr Mamata Muranjan from kem, Dr Sudha Bhattacharya and many PAG were there, workshop organized by Dakshama and Amravati Health Organization.
29th April 2023
Varanasi- Participated as a panelist on Neonatal Screening for prevention of childhood disabilities , on Ferto Genetics 2023, Varanasi at Hotel Clarks, panel discussion moderate by Dr Saurabh Dani and other panelist were Dr Uday Pai and Dr Niharika.
1st April 2023
Organized webinar along with IEM support Charitable Trust focused on hurdles of parents on Treatment and registration of Centre of Exelcellene, key speakers were Dr Annuja Agarwala,Dr Sheetal Mahamunkar, Dr Vaishali Madkaikar, special views also from Dr Aditya Gupta, more than 30 people well attended the webinar, webinar moderate by sarika modi .
27 March 2023
Jaipur-organized and distributed sensory items to specially needy children at umang school jaipur,
Our few members was also there, umang school is doing wonderful, it was very well organized activity done by us
Special thanks to our child veer to come
26th March 2023
Pune- Participated and support series of awareness program race for rare diseases Awareness organized by Organization For Rare Disease India more than 60 people well attended the program along with merd india foundation members at ANP UNIVERSE PUNE.
19th March
Lucknow-Participated race for rare diseases Awareness at janeswar Mishra park organized by ORDI, Director SGPGI sir, Dr Shubha Phadke Chief Guests, key strength of event Mr Swami, SMA Group, Thalassemia Group, And Hemophilia Group and many brave family members. More than 100 people well attended the event.
12th March
New Delhi-Participated and support Race for rare diseases Awareness at AIIMS Delhi more than 200 people well attended the program key Strength of event were AIIMS Director Professor M Srinivas, Dr Madhulika Kabra, Dr Ratna Puri, Dr Neerja Gupta. Mr Prasanna, Sarika Modi and many Respected doctors and patients support groups members.
5th March
Kolkatta- Participated race for rare diseases Awareness organized by ORDI, more then 800 people along with parent, patient
Participated in event ,key strength of event Dr Dipanjana Datta and Shikha ji Metharamani.
Ist March
Participated in AOCN - Rare Disease Webinar focused on diagnosis and treatment .more than 50 doctors and Parents Advocacy Group was well attented along with Dr I C verma.
28th February
New Delhi-Participated in rare disease day celebration organized by Dte.GHS,MoHFW in collaboration with CHEB, AIIMS, MMAMC New Delhi
26th February
ASANSOL
Organized Rare Disease Day awareness seminar along with IEM support Charitable Trust,Reborn, IAP Asansol at Odyssey Club
Key Speakers Were Dr Anil Jalan, Deppanjna Datta, more than 50 people well attended the seminar.
Participated Race for rare diseases Awareness organized by ORDI, Reborn at Odyssey Club Grounds.
19th February
Kochi-Participated in ORDI race for 7, awareness run for rare diseases Awareness in India, few hundred people well attended the run along with children and few patients.
10th January
Participated in webinar organized by IAP PUNE focused ON PERINATAL GENETICS AND Newborn Screening.
Year -2022
18th December
Jaipur-organized health awareness seminarHCG hospital along with lion club jaipur Adarsh nagar, Jain Social Group Rajdahni and women cancer society focused on cancer prevention, symptoms and treatment and our signature campaign Newborn Screening awareness, key speakers were Dr jitendra,Dr sumita Jain, Dr S.k Jain, around 50 people well attended the program.
25th November
Bangalore- Participated as a panelist and give views to child care doctors, Policy makers, researchers about importance of newborn screening, awareness of rare diseases in Indian perspective organized by ORDI and TIGS.
22nd November
Jaipur-Distributed 36 new woolens clothes to newborn babies and discussed about Newborn Screening awareness, Inborn errors of metabolism disease with child care doctors at gangori hospital jaipur, Excellent support by Dr Ramesh Choudary and Team.
21st November
Jaipur -observed IEM Day at Mahila Chikitsalaya and provide 60 new woollens to new-borns and discuss about inborn errors of metabolism disease in child care doctors ,great support by hospital management and Dr Sunil Gothwal and Dr rinku saini .
20th November
Mysore- organized inborn Errors of metabolism day by seminar support by JSS,IAP, ORDI , IEM support trust
more then 80 people along with 9 parents 4 children well Attend the seminar, Dr Seema Kapoor , Dr rohit Cariappa, Dr Archana Bilagi, Dr pardeep, Dr deepa Bhat were key speakers.
30th October
Manipal-Participated as a speaker on National IEM Metabolic Meet , based on the theme Mitochondrial Cytopathies, A minuscule initiative The Centre for Excellence in Inborn errors of metabolism ,organized by department of Pediatrics, medical Genetics and biochemistry Kasturba Medical Collage.
2nd October
Jabalpur -Organized seminar on child health awareness along with lions clubs jablpur at Hotel kalcuri, Chief Guest was jablpur collector Dr. Ilaiyaraaja T., more than 150 people well attended the program.
29th September
Organized webinar along with IEM SUPPORT CHARITABLE TRUST
on Newborn screening awareness and our slogan was Newborn Screening growing stronger. Many doctors gave their views about screening and concluded that as a program Newborn Screening implementation in every childcare centre for treatable diseases like CH, G6PD, HEARING, AND CRITICAL CONGENITAL HEART DISEASE is a necessity.
The webinar was dedicated to newborn screening month that is marked in September all over World.
Key Speakers were Doctors Ratna Puri, Saurabh Dani, Madhulika Kabra, Seema Kapoor, Shubha Phadke, Rohit Cariappa, Chaitanya Datar, Dipanjana Datta, Deepa Bhat and Ankur.
Even though there was bad network and few technical problems ,around 50 people attended the webinar very well.
27th September
Jaipur-organized awareness meet with press conference along with parents and observed Newborn screening awareness month
22 September
Participated in webinar focused on
Round Table Panel Discussion on Importance of Inborn Errors of Metabolism (Newborn Screening) - The Indian Context organized by Synergy Medical Systems key panelist were Dr Usha deve, Dr Priyanshu Mathur, Dr Leslie Edward S Lewis,Dr Suprava Patel and Marine Bellefroid.
21 September
Jaipur-Organized music program and food and new clothes distribution activity along with lion calub jaipur and Mg hospital child hood cancer department,at Kavita cancer care home around 100 people, parents, lions and children well attented the program
4th September
New Delhi-Participated parents Advocacy meet organized by IEM CHARITABLE TRUST, 10 PAG Along with 15 people well attended the program and 20 people participated online.
27th August
Jaipur-organized seminar on health awareness in Girls along with lion club jaipur Adarsh Nagar, Jaipur Dimond and Hope NGO at senior secondary girls school malviya nagar. Dr Neha Agarwal and Dr Nitika Gupta was key speakers.
Jaipur - on 14th August,
organized get together with foundation parents occasion of आजादी का अमृत महोत्सव at lords plaza Jaipur, 10 parents along with 3 children well attended the program
1st July 2022
Mysore- Participated 7th Annual hybrid conference (International), at JSS Medical College, JSS Academy of Higher Education and Research, Mysore Karnataka.
31st July 2022
Jaipur- organized seminar on health care along with Forties hospital and lions clubs at Forties hospital, Dr pankaj Anand, Dr Ashwin Sharma, Dr Sanjay Choudary were key speakers.
1st June 2022
Jaipur-Organized program and Give new clothes to 78 newborn babies at zanana hospital jaipur ,this service activitie combined efforts of merdindia foundation and lion club jaipur Adarsh nagar.
8th may 2022
Participated in The thalassemia day at Mg hospital jaipur ,organized by south East Asia institute of thalassemia and Mg hospital jaipur.
28th April 2022
New Delhi-Participated in Seminar the Launch of Pulse Oximetery Screening & Roll out plan for streamlining the management of neonates and children with Congenital Heart Diseases on at G. B. Pant Hospital Auditorium
22 March 2022
Participated in inIndoUSrare webinar Newborn Screening - The Indian Perspective, by Dr. A Radha Rama Devi and Dr. Arun K Singh.Pioneer of genetic diseases Dr I C verma also gave his views .
27 February 2022
We observed rare diseases day at umeed special children school at jaipur with kind support from lion club jaipur Adarsh nagar, more than 40 people along children well attended the program, we provide many items to specially needy children, this was very best program for us.
Year -2021
19 December 2021
Organized webinar with Lion club Jaipur Adarsh Nagar and Lion Club Jaipur Maitrai on Gastroenterology and Hepatology Problems In Children and key speaker was Dr Lalit Bharadia .
18 December 2021
Participated in webinar on Role of Obstetricians in New born Screening,Speaker were Dr Prakash Gambir & Dr Saurabh Dani.
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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