On January 27, 2022, The EveryLife Foundation for Rare Diseases, in partnership with the Biotechnology Innovation Organization (BIO), National Health Council, and Pharmaceutical Research and Manufacturers of America (PhRMA), hosted…
On January 20, 2022, the Rare Disease Legislative Advocates (RDLA) hosted its first monthly webinar for 2022. In this month's program, the speakers provided an overview of the progress that…
On December 9, 2021, the National Organization for Rare Disorders (NORD) hosted a webinar program titled "Health Equity and Rare Disorders." This webinar was the first of a three-part series…
On November 18, 2021, the Rare Disease Legislative Advocates (RDLA) held their monthly webinar. These webinars provide the rare disease community with updates regarding relevant legislation. As the year begins…
On October 27, 2021, the National Organization for Rare Disorders (NORD) hosted an informational webinar titled "Navigating Diversity, Equity, and Inclusion (DEI) in Rare Disease Non-Profits." This webinar was the…
On October 25, 2021, Rare Disease Legislative Advocates (RDLA) held a virtual briefing for the Rare Disease Congressional Caucus. The subject of this briefing was newborn screening and ongoing discussions…
On September 30, 2021, the National Organization for Rare Disorders (NORD) hosted an educational webinar titled "Rare Cancers: Breaking Down Barriers to Diagnosis, Treatment, and Research." The webinar focused on…
On September 21, 2021, Rare Disease Legislative Advocates (RDLA) hosted its monthly webinar. The focus of this webinar was newborn screening in recognition of Newborn Screening Awareness Month, which is…
On September 2, 2021, Patient Worthy attended a webinar from the SYNGAP Research Fund titled "Treatments in Development for Epilepsy Syndromes: Opportunities for SYNGAP1." This program provided an overview of…
On July 21, 2021, Patient Worthy attended an online webinar presentation titled "How RDCA-DAP Can Help Inform Optimal Trial Design in Progressive Rare Disease." Organized by the Critical Path Institute…
The International Waldenstrom's Macroglobulinemia Foundation (IWMF) recently held the latest webinar in its Global Education series on July 9, 2021. This webinar was a summary of research presented at the…
The Rare Disease Legislative Advocates (RDLA) webinar for the month of June took place on June 17, 2021. This month's webinar provided updates on a variety of legislative topics that…
According to a story from yahoo.finance.com, the medical technology company iCAD, Inc. recently held a webinar featuring several brain tumor experts that discussed the potential of an approach called intraoperative…
The Rare Disease Legislative Advocates (RDLA) held its monthly webinar on May 20, 2021. The primary focus of the webinar was a discussion and overview of drug pricing proposals that…
On May 4th The International Waldenstrom's Macroglobulinemia Foundation (IWMF) held another webinar in its 2021 IWMF Global Education series titled Peripheral Neuropathy: No Easy Feat. As the title implies, the…
The Rare Disease Legislative Advocates (RDLA) held its monthly webinar on April 22, 2021. In this informational webinar, the organization featured several speakers who provided updates on some of the…
The International Waldenstrom's Macroglobulinemia Foundation (IWMF) recently hosted a webinar presentation on February 9, 2021. This webinar, titled "Why Clinical Trials Matter and How to Find the Right One for…
According to a story from GlobeNewswire, the biopharmaceutical company Soleno Therapeutics, Inc. recently hosted a Key Opinion Leader (KOL) webinar, which was focused primarily on the latest updates to its…
Soleno Therapeutics has announced that they will be hosting a Key Opinion Leader (KOL) webinar on Thursday, February 4 at noon EST. This webinar will focus on Prader-Willi syndrome, specifically…
On January 21, 2021, the Rare Disease Legislative Advocates (RDLA) hosted an online webinar that focused specifically on the subject of advocating for rare disease health policy at the state…
The Rare Disease Legislative Advocates (RDLA) held a webinar on December 3rd, 2020. This event focused on the organization's goal of passing Cures 2.0, a bill that would help further…
Just around a month ago, the National Organization for Rare Disorders (NORD) offered a webinar on how to create a patient registry or start a nonprofit organization. NORD's webinar, part…
Ovid Therapeutics has recently announced that it will host a webinar in an effort to educate people about Angelman syndrome and their possible treatment for it, OV101. Speakers will focus…
On October 15th, 2020, the Rare Disease Legislative Advocates (RDLA) held a webinar discussing some of the latest news regarding ongoing legislation that is most relevant to the rare disease…
From 1985 to 1990, Michael J. Fox entertained the world with his portrayals of Marty McFly in the Back to the Future series. Although Marty is figuring out time travel as he…
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