Calling all Stakeholders to Attend the Rare Disease Therapeutic Alliance of 2023


Rare disease stakeholders are called on to participate in the first Rare Disease Therapeutic Alliance of 2023 featuring an agenda presented by Rare Advocacy Movement experts. The agenda will include meeting opportunities, networking sessions, and inclusive discussions. The event, to be held in Boston from June 26th through June 28th, promises to be a comprehensive program for rare disease stakeholders.

Leading biotechnology and biopharmaceutical executives will be in attendance. Also, patient advocacy attendees, regulatory and government authorities, and investors will come together to identify existing issues while sharing solutions and case studies.

This is truly a must-attend event showcasing industry executives and researchers dedicated to diseases and solutions with meaningful outcomes.

Please contact [email protected] for more information.

Increasing Awareness

Rare disease research is increasing. There are many examples that show the influence of rare disease research on healthcare such as an increase in pharmaceutical discoveries.

The insights gained from this research led to pharmaceutical innovations extending beyond rare diseases to the entire medical industry. The number of rare disease treatments has been increasing each year. The importance of rare disorder research is gaining the public’s attention. Continued progress in developing new treatments will not only benefit rare disease patients but will affect the entire medical industry.

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.

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