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Chondrosarcoma CS Foundation, Inc.

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    Videos from Virtual Dialogue 6 are posted and ready to be viewed.

    November 5, 2024 7:17 pm Published by Comments Off on Videos from Virtual Dialogue 6 are posted and ready to be viewed.

    The videos from Virtual Dialogue 6: Improving Stress, Anxiety, Depression and the Quality of Life are posted on the Chondrosarcoma Web Site. Go to: https://csfshayna.org/virtual-dialogue6-improving…/ Please feel free to share the link with others. We are planning to host two Virtual Support Groups, one for CS Warriors and one for Family / Caregivers and will [...]


    Pictures from Steppin’ for the Cause

    October 27, 2024 12:46 am Published by Comments Off on Pictures from Steppin’ for the Cause

    Check out the pictures from Steppin’ for the Cause, the Chondrosarcoma Foundation’s 4th Annual 5K Charity Walk / Run held at Allen Pond, Bowie, Md on October 26. Go to our Facebook page: https://www.facebook.com/groups/1213169615757418


    Insights from the NORD Summit on the Chondrosarcoma Patient Registry

    October 25, 2024 3:11 pm Published by Comments Off on Insights from the NORD Summit on the Chondrosarcoma Patient Registry

    The Chondrosarcoma Foundation had the opportunity to share the results of their first data analysis of the Chondrosarcoma Patient Registry at the NORD: National Organization for Rare Disorders Breakthrough Summit held October 20-22 in Washington, DC. The three-day conference was attended by over 900 attendees representing government health agencies, industry leaders, pharmaceutical companies, academic researchers, [...]


    Registration is open for Chondrosarcoma Foundation Virtual Dialogue to Address Anxiety, Stress and Depression and Quality of Life

    October 22, 2024 2:07 pm Published by Comments Off on Registration is open for Chondrosarcoma Foundation Virtual Dialogue to Address Anxiety, Stress and Depression and Quality of Life

    Wednesday, October 30, 2024, from 7:00pm – 9:00pm (EST/New York time) VIA Zoom. Please register at: https://csfshayna.org/virtual-dialogue6-registration There is still time to register for this event. The Chondrosarcoma Foundation has had many requests from patients and family members to host support groups. They expressed a desire to have a forum to share their concerns to [...]


    Chondrosarcoma Foundation will present at Upcoming Medical Events

    September 21, 2024 5:42 pm Published by Comments Off on Chondrosarcoma Foundation will present at Upcoming Medical Events

    The Chondrosarcoma Foundation will present the findings of their first data analysis through Poster Presentations of the Chondrosarcoma Patient Registry at two upcoming medical conferences. The National Organization for Rare Diseases (NORD), National Summit is scheduled for Sunday October 20 – Tuesday, October 22 in Washington, DC. We have also been approved to present a [...]


    Steppin’ for the Cause on October 26 at 11:00am Allen Pond Bowie, Md

    September 13, 2024 6:44 pm Published by Comments Off on Steppin’ for the Cause on October 26 at 11:00am Allen Pond Bowie, Md

    Please join us on Saturday October 26 at 11:00am at Allen Pond in Bowie, Md as we honor Shayna Kramer’s legacy for our 4th Annual Steppin’ for the Cause 5K Walk / Run. Tickets are $30 and we are commemorating the occasion with T-shirts. To buy a ticket go to: https://www.eventbrite.com/…/steppin-for-a-cause… If you cannot be [...]


    Chondrosarcoma Foundation Hosts Virtual Dialogue to Address Anxiety, Stress and Depression

    September 5, 2024 4:40 pm Published by Comments Off on Chondrosarcoma Foundation Hosts Virtual Dialogue to Address Anxiety, Stress and Depression

    The Chondrosarcoma Foundation has had many requests from patients and family members to host support groups. They expressed a desire to have a forum to share their concerns to those who are also suffering from the debilitating effects of chondrosarcoma both physically and mentally. Data from our Chondrosarcoma Patient Registry indicates that the quality of [...]


    Quality of Life Measures for Chondrosarcoma Patients

    August 20, 2024 4:17 pm Published by Comments Off on Quality of Life Measures for Chondrosarcoma Patients

    The Chondrosarcoma Foundation was the first foundation to be inducted into the NORD IAMRARE Patient Registry 2.0 platform. Since our launch on March 1, 2023, we have had over 230 CS Patients participate in the registry and we are reporting the results of our first full data analysis from the data collected from 169 participants [...]


    How Diagnosis is Critical to Proper Treatment of Chondrosarcoma

    August 13, 2024 3:55 pm Published by Comments Off on How Diagnosis is Critical to Proper Treatment of Chondrosarcoma

    Using a different method (Time to Event) to determine the impact Diagnosis / Misdiagnosis has on Care. The Chondrosarcoma Foundation was the first foundation to be inducted into the NORD IAMRARE Patient Registry 2.0 platform. Since our launch on March 1, 2023, we have had over 230 chondrosarcoma patients participate in the registry, and we [...]


    More Self-reports are needed for Prescribed or Experimental Medications

    August 3, 2024 5:02 pm Published by Comments Off on More Self-reports are needed for Prescribed or Experimental Medications

    The Chondrosarcoma Foundation was the first foundation to be inducted into the NORD IAMRARE Patient Registry 2.0 platform. Since our launch on March 1, 2023, we have had over 230 CS Patients participate in the registry and we are reporting the results of our first full data analysis from the data collected from 169 participants [...]