))
Patient Voices in Drug Research
Fetch error
Hmmm there seems to be a problem fetching this series right now.
Last successful fetch was on February 12, 2024 13:05 (
What now? This series will be checked again in the next hour. If you believe it should be working, please verify the publisher's feed link below is valid and includes actual episode links. You can contact support to request the feed be immediately fetched.
Manage episode 370946697 series 2842289
Вміст надано Patients Rising. Весь вміст подкастів, включаючи епізоди, графіку та описи подкастів, завантажується та надається безпосередньо компанією Patients Rising або його партнером по платформі подкастів. Якщо ви вважаєте, що хтось використовує ваш захищений авторським правом твір без вашого дозволу, ви можете виконати процедуру, описану тут https://uk.player.fm/legal.
One mom’s journey into patient advocacy started after two of her daughters were diagnosed with galactosemia, a rare disease. There’s finally a potential new treatment for this condition, which families say has helped their children who have participated in the clinical trial. But they’re worried their voices are being ignored.
Jodie Solari, Communications Lead for the Galactosemia Foundation shares how the diagnosis changed her life into a life of advocacy, and why she’s pushing for the voices of families like hers to be considered when reviewing new treatments.
Galactosemia Foundation Webpage
Glactosemia Foundation Webpage: Advocating for a Treatment
Voice of the Patient Report: Galactosemia
Protecting Patients Against PBM Abuses Act
Need help?
The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands? Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at the Patients Rising Helpline.
Have a question or comment about the show, or want to suggest a show topic or share your story as a patient correspondent?
Drop us a line: podcast@patientsrising.org
The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising, nor do the views and opinions stated on this show reflect the opinions of a guest’s current or previous employers.
202 епізодів
Поширити
