Facebook Twitter Instagram WhatsApp
    Trending
    • Gomantak Bhandari Yuva Samaj to organise trekking & mega plantation drive across 12 talukas
    • Pune resident commits suicide after gambling losses in Goa casino
    • High wave alert warning issued for coast of Goa
    • Cyclone Biparjoy: Goa on high alert
    • BJP kicks off its Vikas Tirth Yatra in South Goa
    • India tops world ranking in digital payments with 89.5 mn transactions
    • Making Education Accessible: Access Audit of Educational Institutes in Goa
    • BJPs ‘Soot Boot Sarkar’ failed to give solace to people
    Login
    Sunday, June 11
    Goemkarponn – Goa NewsGoemkarponn – Goa News
    Facebook Twitter Instagram
    ePaper
    • Home
    • Goa News
    • Business
    • Political News
    • Local News
    • Goemkar Special
    • More
      • Top News
      • Sports
      • Page 3
      • Crime
      • Snippets
      • Cricket
      • Football
      • Health
      • Off Beat
    • Video News
    • About Us
    • Contact Us
    Goemkarponn – Goa NewsGoemkarponn – Goa News
    Home»Health

    GSCPCR calls for a holistic, comprehensive,& multi-disciplinary response to rare diseases among children

    adminBy adminMay 11, 2023 Health No Comments2 Mins Read
    Share
    Facebook Twitter LinkedIn Pinterest Email

    Goemkarponn Desk

    PANAJI: The Goa SCPCR conducted a meeting with stakeholders and advocacy groups to review the response to rare disease among children in Goa on 10th May 2023 in Chambers of Chairperson.

    The meeting was attended by Members of the Commission, Directorate of Health Services, Paediatric Department, Goa Medical College, Directorate of Education, Novi Survat and affected parents.

    In the opening remarks, Peter F. Borges, Chairperson said that children affected by rare diseases are currently marginalized and invisible and have a right to life, health, good quality of life and holistic development and good quality of treatment and care. They are living with chronic and complex conditions, with increased suffering, requiring multidisciplinary care.

    Further, he said that caring for such children entails lifelong challenges and personal sacrifice of many parents, most of it which disproportionately falls upon women, particularly mothers, forcing them to abandon their employment with very direct implication on their economic conditions, with scant support and social protection from government.

    The following key recommendations were proposed by the Hon’ble Commission, besides calling for effective implementation of National Policy for Rare Diseases, 2021 in Goa

    Urgently identify and create a registry of children with rare diseases as notified in the National Policy for Rare Diseases, 2021, to understand the burden in the state and include other rare diseases which are not listed in the policy, in the registry.

    All children living with rare diseases in Goa should be identified and referred to Centre of Excellence for provision of financial support of Rs. 50 lakhs and other services as per National Policy for Rare Diseases, 2021.

    Include children with rare disease as a category for social protection benefits through Dayanand Social Security Scheme by Social Welfare to ease financial hardship in families of children with rare disease, i.e. to purchase specialized equipment and compensate for loss of income to care givers.

    Provide for home-based education with appointment home based educators for children with rare diseases under the Samagra Shiksha. Children with rare diseases face great difficulty to attend school due to inaccessibility of facilities and non-adapted teaching methods and due to prejudice, stigma, and discrimination

    Include Glanzmann Thrombosthenia in the National Rare Disease Policy 2021. The disease, a rare bleeding disorder, in which a slight injury can lead to bleeding and blood platelets must be given every bleed, is diagnosed in a child in Goa.

    Comment

    admin

    Keep Reading

    Goa to host Regional Council Meeting, Western Region of Hemophilia Federation (India) on June 3-4

    Mukta Drishti Foundation gives Free Mobile Ambulance to provide Free Health Checkup facilities in Rural Canacona

    Goa SCPCR reviews response to rare disease among children

    Health officials in Canacona issues precautionary note over the increasing heatwave

    HEALTH DEPARTMENT TO UNDERTAKE COVID TESTING AT AIRPORTS FOR G20 DELEGATES

    Goa’s health sector witnesses transformational change Ahead of G20

    Add A Comment

    Comments are closed.

    Archives
    • June 2023
    • May 2023
    • April 2023
    • March 2023
    • February 2023
    • January 2023
    • December 2022
    • November 2022
    • October 2022
    • September 2022
    • August 2022
    • July 2022
    • June 2022
    • May 2022
    • April 2022
    • March 2022
    • February 2022
    • January 2022
    • December 2021
    • November 2021
    • October 2021
    • September 2021
    • August 2021
    • July 2021
    • June 2021
    • May 2021
    • April 2021
    • March 2021
    • February 2021
    • January 2021
    • December 2020
    • November 2020
    • October 2020
    • September 2020
    • August 2020
    • July 2020
    • June 2020
    Categories
    • Big Story
    • Business News
    • Cricket
    • Crime
    • Football
    • Goa News
    • Goemkar Special
    • Health
    • India News
    • Local News
    • Off Beat
    • Opinion
    • Page 3
    • Photos
    • Political News
    • Snippets
    • Sports
    • Top News
    • Trending
    • Videos
    About
    About

    The Goemkarponn digital media platform gives you the latest news of the Goa Region. To read Goemkarponn News on your mobile, download our Android App (Goemkarponn News App).

    Facebook Twitter Instagram Pinterest YouTube WhatsApp
    LINKS
    • Local News
    • Goa News
    • Political News
    • Goemkar Special
    ADVERTISEMENT
    AVAILABLE AD BANNER
    • About Us
    • Contact Us
    Goemkarponn © 2023 - Powered by Xperts!.

    Type above and press Enter to search. Press Esc to cancel.

    We use cookies on our website to give you the most relevant experience by remembering your preferences and repeat visits. By clicking “Accept”, you consent to the use of ALL the cookies.
    Do not sell my personal information.
    Cookie SettingsAccept
    Manage consent

    Privacy Overview

    This website uses cookies to improve your experience while you navigate through the website. Out of these, the cookies that are categorized as necessary are stored on your browser as they are essential for the working of basic functionalities of the website. We also use third-party cookies that help us analyze and understand how you use this website. These cookies will be stored in your browser only with your consent. You also have the option to opt-out of these cookies. But opting out of some of these cookies may affect your browsing experience.
    Necessary
    Always Enabled
    Necessary cookies are absolutely essential for the website to function properly. These cookies ensure basic functionalities and security features of the website, anonymously.
    CookieDurationDescription
    cookielawinfo-checkbox-analytics11 monthsThis cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Analytics".
    cookielawinfo-checkbox-functional11 monthsThe cookie is set by GDPR cookie consent to record the user consent for the cookies in the category "Functional".
    cookielawinfo-checkbox-necessary11 monthsThis cookie is set by GDPR Cookie Consent plugin. The cookies is used to store the user consent for the cookies in the category "Necessary".
    cookielawinfo-checkbox-others11 monthsThis cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Other.
    cookielawinfo-checkbox-performance11 monthsThis cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Performance".
    viewed_cookie_policy11 monthsThe cookie is set by the GDPR Cookie Consent plugin and is used to store whether or not user has consented to the use of cookies. It does not store any personal data.
    Functional
    Functional cookies help to perform certain functionalities like sharing the content of the website on social media platforms, collect feedbacks, and other third-party features.
    Performance
    Performance cookies are used to understand and analyze the key performance indexes of the website which helps in delivering a better user experience for the visitors.
    Analytics
    Analytical cookies are used to understand how visitors interact with the website. These cookies help provide information on metrics the number of visitors, bounce rate, traffic source, etc.
    Advertisement
    Advertisement cookies are used to provide visitors with relevant ads and marketing campaigns. These cookies track visitors across websites and collect information to provide customized ads.
    Others
    Other uncategorized cookies are those that are being analyzed and have not been classified into a category as yet.
    SAVE & ACCEPT

    Sign In or Register

    Welcome Back!

    Login to your account below.

    Lost password?