The Rein in Sarcoma Patient Starter Notebook provides support, hope, information and valuable resources to newly diagnosed sarcoma patients. Rein in Sarcoma is excited to announce that the 7th Edition is now available. Complete the short RIS Support Network form and we will mail it to you (within the United States) at no cost, or use the link and password which will be emailed to you to view and/or downloaded the notebook from our website.
Volunteer, Elisabeth Will led the way in organizing the edits for the newest edition of our Patient Starter Notebook. The Notebook is the first introduction many newly diagnosed sarcoma patients have to our great organization and patients have told us that the notebook has been a valuable resource for them.
The patients spoke and we listened. At last summer’s Party in the Park, the Red Flags Education Committee administered surveys asking patients what information in the notebook was most useful to them. Surveys were also mailed directly to some patients who had received a notebook. Based on survey results, the committee decided to make changes to the notebook that would make it more helpful, informative and easier to navigate for newly diagnosed patients.
Here are some of the major changes and improvements we made to the 7th Edition of the Patient Starter Notebook.
- New therapies and current research are included in the notebook.
- Dr. Safia Ahmed provided a section on new radiation therapies for sarcoma.
- The Sarcoma Scholars wrote five articles with information about specific sarcoma subtypes: Ewing Sarcoma, Leiomyosarcoma, Liposarcoma, Malignant Peripheral Nerve Sheath Tumors (MPNST), and Rhabdomyosarcoma.
- The hospital resource sections were updated with current news about sarcoma doctors and treatments.
- A Regions Hospital resource section was added, similar to the University of Minnesota and Masonic Children’s Hospitals, Mayo Clinic – Rochester, and Children’s Hospital and Clinics – Minneapolis sections.
- We were able to list many more patient resources including:
- Organizations offering financial assistance to programs for children.
- An interactive national listing of sarcoma centers of excellence.
- A major new listing of sarcoma advocacy organizations across the country, including organizations that specialize in specific sarcoma sub-types.
- We also made certain that listed website links were up-to-date and the sites still useful.
We hope our updated Patient Notebook is better equipped to provide the information and support that sarcoma patients are seeking. If you have not yet received a notebook, have questions, or have feedback on the notebook, please visit the notebook page on our website, or call the Rein in Sarcoma office at 763-205-1467 or 1-844-727-2664.