• ada-g

    Member
    December 6, 2021 at 9:04 am

    I have two that I work with.  They’re amazing!

    Sickle Cell 101 ( SC101.org) is a web based organization based in California that specialized in educating the public at large via all social media platforms.  We also have a Spanish page called SC101es. I translate the English social media posts to Spanish.

    The second organization is based in Brooklyn, NY.  It’s called Sickle Cell Thalassemia Patient  Network (SCTPN) and besides education they also aid Sickle Cell patients with advocacy, transportation to and from their doctor’s appointments and they lobby for better care.

    I’m extremely proud of their work!

    Ada G.

  • stephanie-baker

    Member
    December 6, 2021 at 2:16 pm

    I have worked with 2 – MidSouth Sickle Cell Foundation and Methodist Comprehensive Sickle Cell Center in Memphis, TN.  I have participated in annual fund raising runs and other festivities they had.  Now, I currently attend Methodist Comprehensive Sickle Cell Clinic and have raised money for both organizations.  We need better ways of  keeping GOOD doctors around and having a more fine tuned system.  I can say they are trying.

  • michael-quadri

    Member
    January 5, 2022 at 10:43 am

    That is great, it seems like there is a real positive effort with Charities especially in your areas.  From personal experience, I have not come across many charities within the UK, However, one of the main charities is Sickle Cell UK.

    We have a lot of amazing people (usually carers or carriers) that take action by hosting blood drives and awareness events along with the support of our National Health Service (NHS).

    I believe charities have a very fundamental role in bridging the gap for many people that are not familiar with Sickle Cell, so I am happy that this is being done so well in your areas.

     

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