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    IndoUSrare Patient Contact Form

    Thank you for your interest in seeking information assistance from IndoUSrare. Please provide the following information to help us understand your current situation.

    Required*

    Full Name *

    Please enter your full name

    Your email address *

    An email address where we can contact you at. We will not share your contact info with anyone.

    Phone number

    Please enter your phone number with area code, if applicable. We will not share your contact info with anyone.

    Location *

    City / State where you live

    Your physician / hospital*

    Name of physician & hospital are you current seeking treatments for this disease. Include city/state of the hospital


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    IndoUSrare Patient Contact Form

    Required*

    About the disease

    Tell us about the disease to help us understand patients better. Enter N/A if you don't know answers to any question.


    Mention the name of the gene involved, any other genetic/scientific details as much as you know


    How are patients generally diagnosed? How many months/years into life do they get the diagnosis? Any other information pertaining to diagnosis.

    How are patients treated for this disease today? Include allopathic medicines, aryurvedic medicines, home remedies, and other activities to manage symptoms commonly used by patients

    Describe any prospective treatments being developed for this disease. Include their development status, trials status, country where it is currently being developed etc

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    IndoUSrare Patient Contact Form

    Thank you for your interest in joining IndoUSrare as a member. Please complete this form to initiate membership


    Mention the name of the gene involved, any other genetic/scientific details as much as you know


    How are patients generally diagnosed? How many months/years into life do they get the diagnosis? Any other information pertaining to diagnosis.

    How are patients treated for this disease today? Include allopathic medicines, aryurvedic medicines, home remedies, and other activities to manage symptoms commonly used by patients

    Describe any prospective treatments being developed for this disease. Include their development status, trials status, country where it is currently being developed etc

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    Copyright ©2022 Indo US Organization for Rare Diseases. All rights reserved. IndoUSrare is a registered 501(c)(3) charity organization.
    MS. KANAN LATHI

    Kanan Lathia is an Ambassador and scientific consultant at Indousrare.She has spent 20+ years as a research scientist focusing on neurodegenerative diseases, cancer, and HIV. She has also worked as a project manager supporting teams in building brain maps of the first 1000 days of babies. Kanan’s passion for rare diseases is driven by a personal cause. Her work with Dup15q Alliance strengthened her passion for giving back to rare disease families. Kanan hopes to scale the organization’s efforts by securing funding and building a patient alliance membership program. Kanan loves yoga and spending time between the US and India.

     Dr. Krishna Ramaswamy

    Dr. Krishna Ramaswamy is a life science professional with experience in research, management consulting, and business development in academia and industry. She has a Ph.D. in Biological Sciences from University at Buffalo, SUNY, and pursued postdoctoral research in cell biology from the University of Southern California, Los Angeles. She has worked as a consultant for the biotech/pharma industry and worked with Dr. Harsha and ORDI in the past for about 2 years. Dr. Krishna currently resides in Hyderabad India and has a keen interest in the rare diseases space and would like to bring awareness about the various diseases, diagnoses and treatments that are available and those in the pipeline. She first began working in the rare disease space during her postdoctoral training and has worked on peroxisome biogenesis disorders under the guidance of Dr. Joe Hacia at USC.

    Ms. Neeraja

    Neeraja is in her junior year of high school, studying at a School in Gurgaon, India. She has completed all 8 grades in a set of vocal examinations conducted by Trinity College as the captain of the Student Council in her school, currently serving the post of House Captain. Neeraja aims to find solutions to the problems associated with the fields of healthcare, technology, and sustainable development. She is passionate about teenage welfare and has founded a youth-centric organization called ‘Discover Yourself’ through which she aims to inspire, and collaborate with young people across the world and wants to bring awareness regarding various teenage and adolescent issues

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