Category: <span>Visits to LSD Centres</span>

Kiev, Ukraine, November 2015

I visited Kiev, the Ukraine capital, in November 2015. I was a guest of Dr Natalia Pichkur at the Centre of Orphan Diseases, National Children Specialized Hospital OKHMATDYT. I participated in a clinic and also gave a lecture.

Some pictures from my visit

With the team at the hospital. Dr Yana Doronina, Dr Natalia Pichkur, myself, Dr Natalia Samonenko

Bengaluru and Chennai, India, January 2016

In January 2016 I visited two centres in India. With me were Tanya Collin-Histed, Helen Whitehead from the UK Gauchers Association, Elin Davies, a dear friend and colleague with whom I have worked for over 15 years, and founder and CEO of Aparito, a wearable technology company, and two young type III Gaucher adults, Sara Khan and Radhika Dhayatker.

We first went to Bengaluru, where we were guests of Dr Meenakshi Bhat, a clinical geneticist at the Centre for Human Genetics. Meenakshi has worked with LSD families for many years. I had visited the centre several times in the past.

We participated in clinics and a CME event, at which Radhika and Sara both spoke. We also had an opportunity to meet Kiran Majumdar-Shaw, CEO of Biocon, the largest biopharmaceutical compnay in India.

Some pictures from the visit below

Tanya and Helen with Sara and Radhika at the CHG entrance

Sara and Radhika with Kiran Mazumdar-Shaw

Radhika with a patient at the Bengaluru clinic

Elin with some of the patients at the clinic

Dr Bhat (extreme right) with members of her team at CHG.

We then traveled to Chennai, where we were guests of Dr Sujatha Jagadeesh, clinical geneticist at Mediscan at the Republic Day MDT clinic that I have referred to earlier.

Elin has developed wearable technology which her company is testing out in Gaucher disease patients. Manjit Singh, President of LSDSS, had kindly arranged for some type I patients to attend on the day of the clinic so that Elin could demonstrate the wearable and patients could begin testing it.

Pictures below

Tanya speaking at the flag-hoisting ceremony at Mediscan. To her right is Manjit Singh, President of LSDSS

Dr Bina with a family in the Chennai MDT clinic

Patient being seen by an ENT specialist at the Chennai MDT clinic

Dr Jayarekha with a family at the Chennai MDT clinic

With Dr Jagadeesh at the Chennai MDT clinic

Dr Murugan, paediatric neurologist with a family at the Chennai MDT clinic

Group picture with families at the Chennai MDT clinic

Elin demonstrating the wearable technology to the type I Gaucher patients.

The group with Dr Jagadeesh and the Type I Gaucher patients

Lahore Children’s Hospital, Pakistan, November 2016

This was my second visit to the Lahore Children’s Hospital, Pakistan; the earlier one was in October 2015. On this occasion I was accompanied by my dear friend and colleague Tanya Collin-Histed, Chief Executive of the UK Gauchers Association. We were guests of Professor Cheema in the Department of Paediatric Gastroenterology.

Some pictures from our visit.

Department of Medical Genetics, SGPGI Lucknow, India, February 2017

I visited SGPGI (Sanjay Gandhi Postgraduate Institute of Medical Sciences) Lucknow from 14-16 February, where I was a guest of Professor Shubha Phadke in the Department of Medical Genetics. The department developed the first DM program in Medical Genetics in India. Its alumni are now heading departments all over the country. There is also a highly developed laboratory. For more information please see their website links as above.

The SGPGI has a beautiful campus, very quiet, with excellent security. Accommodation is provided to the residents on the campus. Altogether the atmosphere is very stimuating and conducive to study.

During my stay I did a clinic, where cases were presented by the postgraduate students, and gave a few lectures. Some pictures from the visit are attached.

With the Medical Genetics Team at SGPGI Lucknow.

Department of Genetics, AIIMS, New Delhi, February 2017

Along with Tanya Collin-Histed, CEO of the UK Gauchers Association, I visited the Department of Genetics at the All India Institute of Medical Sciences, New Delhi on the 25th of February 2017. This was my third visit in almost as many years after my graduation as a postgraduate in paediatrics nearly 30 years ago!

We were guests of Prof Madhulika Kabra, head of the department, and her colleague Dr Neerja Gupta. The department has recently become recognized for the DM (Medical Genetics) course.

We conducted a clinic, which was followed by a couple of interactive lectures. Both sessions were lively and intense, with excellent participation by the postgraduates and DM students.

We also met with Mr Manjit Singh, CEO of the Lysosomal Storage Disorders Support Society (LSDSS) who has been campaigning tirelessly for treatment and other support for LSD patients in India.

Tanya with some of the families at the clinic

Tanya and myself with Dr Kabra, Dr Gupta, Dr Yadav (DM student), Anil Raina (,General Manager (South Asia) & Head – India at Sanofi Genzyme) and Mr Manjit Singh, CEO of LSDSS)

Chennai February 2017

From Delhi, Tanya and I flew to Chennai to attend the multidisciplinary clinic organised by Mediscan. As mentioned in an earlier post, this clinic is normally held on January 26th, India’s Republic Day. However, this year the team were busy organising ISIEM 2017 and so the clinic was moved.

Pictures from the clinic below