Introduction
Today HD affected families in India face a plethora of challenges in dealing with the disease with meagre institutional support. Clinicians and health care professionals face their own challenges in treating, in keeping abreast with the rapidly evolving guidelines. This HD conference is the first in India to discuss the important aspects of HD for the benefit of affected families and the involved professionals. This event will be graced by the president of IHA, the president of EHA, founding director of George Huntington institute besides prominent clinicians and therapists from India
Objectives
- To bring about changes in the model of care, attitudes, protocols for treatment and give boost for HD research in India.
- Formal announcement of the HD society for India, a platform through which all the stakeholders work together with shared objectives and vision.
Venue
Conference Hall, MV Govindaswamy building. NIMHANS, hosur road, Bengaluru 560029
Dates
August 16th & August 17th 2019
Themes of the Conference
- HD clinical aspects, latest pharmaco-non-pharmacotherapy guidelines for treatment
- Ethics involved in HD diagnosis (symptomatic, pre-symptomatic, pre-natal) and importance of genetic counselling
- Research in HD, latest drug trials, hope for the future
- Unmet needs of HD patients and the need for improved health services (Patient’s perspectives) through policy changes.
- Establishment of HDSi, aims, objectives, road map for next 2 years- Press meet
PROGRAMME
| Day 1: 16thAugust 2019 | ||
| 8.30 am onwards | Registration | |
| Inauguration and Lighting of the Lamp | ||
| 9.30 -10.40am | Invocation/Director’s address /HOD address/ Inauguration of HDSI Address by Founder member of HDSI : Dr Nayana ShahHD: the international perspective : Mr Svein Olaf Olsen HD experience in GCAT clinic : Dr Sanjeev Jain | |
| Tea Break (10.40-11.00AM) | ||
| Clinical Services and care for HD in IndiaChairs:Dr Sanjeev Jain & Dr Ravi Yadav | ||
| 11.00-11.50am | HD experience at the NIMHANS Clinic : Prof Pramod PalHD experience in Kolkata : Dr Hrishikesh Kumar | |
| Present and future prospects for HD treatmentChairs: Dr Vijay Chandru & Prof Sharat Chandra | ||
| 12.00- 12.50pm | Clinical trials – Nuts and bolts: Dr Ralf ReilmannOpen platform for Rare diseases: Dr Vijay Chandru | |
| 1.00-1.30pm | Update on treatment guidelines for HDPanel Discussion : Dr RalfReilmann,Dr Sanjeev Jain, Dr Pramod Pal & Dr Hrishikesh Kumar | |
| Lunch break with posters(1.30-2.30PM) | ||
| HD diaries | ||
| 2.30-4.30pm | Dr Meenakshi Bhat: Introduction of ethical issues in late onset disorders Compiled narrative of patient experiences : Ms Bhakti and Mr Vikas Bhat Panel : Ms Astri Arnesen, Dr Hrishikesh Kumar, Dr Meenakshi Bhat | |
| Tea break (4.30-5.00 PM) | ||
| Patient narratives contd.Chairs: Dr Nikhil Ratna and Dr Meera Purushottam | ||
| 5.00-5.40pm | The European HD family experience: Ms Astri Arnesen & Mr Svein Olaf Olsen | |
| Caring for a patient with dementia: Wing Cmdr Sabbarwal | ||
| Day 2: 17thAugust 2019 | ||
| 9.00am – onwards | Registration | |
| Genetics of Huntington’s diseaseChairs: Prof Sharat Chandra/Dr Ralf Reilman ; Dr. Gautham Arunachal & Dr Sanjeev Jain | ||
| 9.30-10.00 am | HD genetics, history and geography; the road ahead : Dr Sanjeev Jain | |
| 10-10.40 am | Genetic Diagnostics & Ethical Issues: Dr Meera Purushottam & Dr Nikhil RatnaPre implantation genetics, prenatal counseling: Dr Sridevi Hegde | |
| Tea break (10.40-11.00am) | ||
| Support for HDChair: Dr Meera Purushottam | ||
| 11.00-12.20pm | Outcome and co-morbidities in HD : Dr Nitish KambleHD rehabilitation and care: Dr B K Yamini | |
| IHA organization and support for HDSI : Mr Svein Olaf Olsen | ||
| EHA – model/insights for patient support group: Ms Astri Arnesen | ||
| 12.30-1.30pm | Question answer session | |
| Lunch break with posters (1.30-2.30PM) | ||
| 2.30-3.00pm | Travails and Victories of Thalassemia Patient Groups: From Disability Bill toFree Medicines : Dr Namitha Kumar | |
| 3-3.20pm | HD treatment – is Insurance available? : Ms Vijayalakshmi Magal | |
| 3.20-3.40pm | Targeting mutant huntingtin toxicity by DNA aptamers and small molecules: Dr Ravi Vijayvargia | |
| 3.40-4.00pm | Questions and Answers | |
| 4.30-5.00pm | Concluding Session | |
| High tea for all participants(5.00-5.30pm) | ||
| 5:30-6:30pm | HDSI, aims, objectives, road map ahead (HDSI board members and advisors) | |
List of Speakers
Dr Ralf Reilmann,Founding director, George-Huntington-Institute, Muenster, GermanyDr Nayana Shah,Director, Manthan- Centre for Human and Organization Development,Ahmedabad, INDIA
Mr Svein Olaf Olsen,President, The International Huntington´s Association, Norway
Ms Astri Arnesen, President, European Huntington Association, Norway
Dr Sanjeev Jain, Professor,Molecular genetics laboratory, Dept of Psychiatry, NIMHANS
Dr Pramod Pal, Professor,Department of Neurology, NIMHANS
Dr Hrishikesh Kumar, Head,Department of Neurology, Institute of Neurosciences, KolkataDr Vijay Chandru,co-Founder & Director at Strand Life Sciences, Bengaluru, Karnataka, IndiaDr Sridevi Hegde,Head, Department of Medical Genetics, Manipal Hospital,Bengaluru
Prof H Sharat Chandra,Honorary Director, Centre for Human Genetics, Bengaluru
Dr Meenakshi Bhat,Faculty, Centre for Human genetics, Bengaluru.
Dr Ravi Yadav,Professor, Department of Neurology, NIMHANS.
Dr Nitish Kamble, Assoc ProfessorDepartment of Neurology, NIMHANS
Dr B K Yamini, Asst Professor, Department of Speech pathology, NIMHANS
Dr Namitha Kumar, Scientist,Centre for health Ecologies and Technology (CHET), BangaloreDr Meera Purushottam, Senior Scientific officer, Molecular Genetics lab, Dept of PsychiatryDr Nikhil Ratna,Doctoral Student, Department of Clinical Neurosciences, NIMHANS
Dr Ravi Vijayvargia,Department of Biochemistry, M .S. University of Baroda
Dr Gautham Arunachal, Asst Professor, Department of Human genetics, NIMHANS
Ms Vijaylakshmi Magal,Insurance Consultant and Trainer, Bengaluru
Organizing Committee
Dr Sanjeev Jain
Dr Pramod Pal
Dr Nitish Kamble
(Dr Yamini
Dr Selva Ganapathy
Dr Priya Thomas
Dr Meera