Women s Group Hemophilia Federation (India)

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1 Name Image City/State/Country Details Invited Dignitary Honorable Minister Smt. Maneka Sanjay Gandhi Invited Dignitary Sushma Swaraj, External Affairs Minister of India Delhi, India Delhi, India Smt. Maneka Sanjay Gandhi is the Indian Union Cabinet Minister for Women & Child Development in the Government of PM Narendra Modi. She is also an animal rights activist, environmentalist, and widow of the Indian politician, Sanjay Gandhi. She has been a minister in four governments, and has authored a number of books in the areas of etymology, law and animal welfare. Maneka Gandhi is a member of the Nehru-Gandhi Family. Sushma Swaraj is an Indian politician and the current Minister of External Affairs of India. She is the second woman to be India's external affairs minister, first being Indira Gandhi. She has been elected seven times as a Member of Parliament and three times as a Member of the Legislative Assembly. 1

2 Mrs. Gumeet Khanna New Delhi, India Chairwoman, WGFHI. She has been associated with Delhi chapter since its inception and been working actively for 26 yrs. Writer of a larger percentage of our Women s Leadership Guide. Mrs. Jayashree Kumar Chennai, India Southern Regional Coordinator. Actively involved with the women groups of the local chapters. Initiated income generation activities to support PWH families, conducted workshops, counseling sessions etc. Mrs. Trupti Mohanty Bhubaneswar, India Founding Member of Women Group Bhubaneswar Chapter. From 1993 she has been involved with the chapter and organized various awareness camps, fund raising events, school awareness etc. Mother to a son who has hemophilia. Presenter: Status of Women in India and Women Empowerment Mrs. Sonal Sakariya Rajkot, Gujarat India Present Secretary of Hemophilia Society Rajkot Chapter. Actively involved with hemophilia initiatives from last 20 yrs. She is one of the women leaders in western region, Founding member of womens group, has developed succesfully economical rehabiliation for her chapter for the past last 11 years. Presenter: Project Impact Report, Economic Rehabilitation, Women s Group in Thane 2

3 Mrs Nilanjana Sarkar Ganguly Kolkata, India She has been associated with Kolkata chapter for nearly 8 years. She is an Ex Executive Committee member of Kolkata chapter and an active member of the women group. She is a mother to a son who has hemophilia. Presenter: Role of Women in Hemophilia Care Ms. Nabila Husseni Ahmedabad, India EC member of Chapter & actively involved with hemophilia initiative for the last 7 years. Nabila has factor V deficiency, a rare bleeding disorder. Assistant Regional Coordinator Western Region WGHFI National Communication Specialist Presenter: Presentation on Leadership and Women Empowerment Mrs. Deepa Chavda Rajkot Chapter Mother of son with severe FVII hemophilia. EC member of the Rajkot Chapter and is in charge of women's group of chapter. She works as a coordinator for SOL and other scholarship opportunities. Work as a counselor for Carrier Detection / PND and guides the patients as well as Communicate with KEM Hospital. Professionally she is aspiring her career in music (Vocal). 3

4 Mrs. Sudha Awashty Lucknow, India Assistant Coordinator, North Region. Active in her Chapter. Mother of a son with hemophilia. Mrs. Gursharn Kaur Delhi, India Assistant Coordinator, North Region. Active in her Chapter. Mother of a son with hemophilia. Mrs Rajani Priya South Region Assistant Coordinator, South Region. Active in her Chapter. Mrs. Prajoythi Kunnamkulam, India Assistant Coordinator, South Region. Active in her Chapter. 4

5 Mrs Ujwala Nirvane Kolhapur She is the assistant co-ordinator of the west region. She is helpful to her Kolhapur Chapter and is marathi speaking. Mrs. Sanjukta Barooah Assam, India Motivational Speaker and Professional Dancer Ms. Cheryl Nineff D Ambrosio Mrs. Fatima Sheidaei Seattle, Washington USA Tehran Iran Volunteer, WGHFI Project Mgmt and Organization Developer Founder and President of MyGirlsBlood Author: Pooling Blood (iuniverse 2007) Parent of two girls with severe factor V deficiency Previous editor on World Federation of Hemophilia, Developer of Strategic Planning in support of building Women s Groups and Empowerment for Hemophilia Communities, worldwide. Link to her site: Fatimah has two sons with severe Hemophilia A and fund raiser for Iranian Hemophilia Society. Fatima will present what she is doing in her hemophilia community to develop a women s group in Iran. 5

6 Mrs. Kathleen Gerus-Darbison Michigan USA Educator and advocate for women s issues. She combines art and life together by teaching women how to make tiny dolls, and at the same time, help them work through their personal issues. Link to her site: Mrs. Shirin Ravanbod Tehran Iran Shirin has a 23 years old son with severe HA. She and her daughter are symptomatic carriers of hemophilia. She has been volunteering in genetic laboratory over the past 12 years as volunteer. Previously, a member of the Board of the Iranian Hemophilia Society for three terms and involved in building the first hemophilia comprehensive care centre. Recently, she has moved to the Iranian Hemophilia and Thrombophilia Association. Ms. Prabha Pinto Bangalore, India Prabha is a legal advocate and President of the Bangalore, India Chapter. She will provide background information on Women s Rights in India. She is the mother of a son with hemophilia, who has passed. Link to Wiki: 6

7 Mrs. Carol Nave Seattle, Washington USA Carol is President of Bleeding Disorder Foundation of Washington on the board for 8 years. She is the Director / Secretary for MyGirlsBlood for past 4 years Carol is a parent of a daughter with Hemophilia A (she had a genetic mutation so not in the family) and she has been a volunteer in the Hemophilia community for the last 12 years. Dr. Nita Radhakrishnan Delhi, India Dr Nita is a Haemophilia specialist. She has completed an NNHF fellowship at the Angelo Bianchi Bonomi Hemophilia and Thrombosis Center in Milan, Italy. She presents information related to Women and Bleeding at our Women s Group Workshops. Mrs. Richa Mohan New Delhi, India Richa has an M.Phil in Clinical Psychology from Delhi University and has more than 14 years of experience in social sector in the field of counseling and guidance, rehabilitation, health education and communication, capacity building and training. She is serving as Chair, Psychosocial Committee World Federation of Hemophilia Author: A guide to Psychosocial Intervention for Person with Hemophilia and their Families Grantee for NNHF and HFI for Consultation to WGHFI 7

8 Dr. Annamma Kurien Manipal, India Dr. Annamma Kurien is the Associate Dean & Professor of Pathology MBBS, DCP, MD at Melaka Manipal Medical College. She is helping us connect the dots between our Women s Group and Angawadi and ASHA workers. Her NNHF Project IDEEA is the 2014 NNHF Project of the Year. She is also President and key person of Manipal hemophilia society. Involved in organising activities for care, education and rehabilitation of persons with haemophilia (pwh) and related disorders by organising camps, comprehensive haemophilia clinics and other activities Pwh strength: 211 Dr.Shanmuganathan N. Narayanan Malaysia Dr. Shan Narayanan is a Paediatrician with interest in Child Development and Childhood Disability. He has Clotting Factor XIII Deficiency. This has impacted his life significantly. He is now in a journey, sharing his lifetime experience and motivating individuals with bleeding disorders and other special needs. Mrs. Andrea Trinidad Echavez Manila, Philippines Member of the Hemophilia Association of the Philippines, and Ambassador for MyGirlsBlood (a non-profit organization), USA. She is a woman with von Willebrand s Disease. 8

9 Mrs. Elizabeth Garman California, USA She is a nurse and enjoys singing. She recently attended the HFI Youth Group Annual meeting in Hyderabad with her husband, Josh who is a PwH and an avid snake enthusiast. Mrs. Raquel Martinez Buenos Aires, Argentina Mrs. Raquel Martinez grew up in a home with family members who have hemophilia. She has a child with severe hemophilia A. She has put together information to help other mothers. She is a member of the Hemophilia Foundation of Mar del Plata. Mr. Nataraj Selvaraj Bangalore, India Nataraj studied electrical and electronics engineering at Mahendra Engineering College. He is a web developer at Tatwaa.in. He is a person with hemophilia. He has been the key technical support provider enabling the Women s Group Hemophilia Federation (India) to capture video meetings and hold effective workshops with functioning computers and sound equipment. 9

10 Mr. Premroop Alva Bangalore, India Premroop Alva has severe Hemophilia B. He is General secretary and founding member Hemophilia society Bangalore chapter. He has built a strong youth group in the chapter and now with Prabha Pinto is focusing on building a sting women's group in Bangalore. Mr. Mukesh Garodia Guwahati, India Mukesh is an EC Member of HFI. He is the Secretary General at Hemophilia Society Guwahati Chapter and Novo Nordisk Haemophilia Foundation Liaison for WGFHI Grant with VP HFI Development, WGHFI and ECHFI. Also, the key Developer of Strategic Planning in support of building Women s Groups and Empowerment for Hemophilia Communities, worldwide. Mr. Vikash Goyal Bangalore, India Vice President Development of Hemophilia Federation (India). Executive Committee Member of Hemophilia Federation (India). Grant holder with Novo Nordisk Haemophilia Foundation for Women s Group LEAD IT project. He is the father of a son with hemophilia, who has passed. HFI website: 10

11 Mr. Alexandre Alencar Zurich, Switzerland Senior Project Manager Novo Nordisk Haemophilia Foundation Programme Manager for NNFH Grants to India Mrs. Susanne Brandl Zurich, Switzerland General Manager Novo Nordisk Haemophilia Foundation 11