You are using an unsupported browser. Please update your browser to the latest version on or before July 31, 2020.
close

Showing articles from General Resources tag

Genetic Testing: Getting To a Diagnosis

Technology has advanced tremendously over the last decade. The costs of tests are decreasing. Genetic testing is on the rise, but it is still unfamiliar territory for most patients and caregivers and even many physicians. We wrote this guide to help you understand your options and make good decisions. Only you can d…

Next: Imagining the Future of Rare Disease

Over the next decade, we have the potential to transform the rare disease landscape, bringing forward new pathways to diagnosis, new treatments, and new ways to deliver care. Join us to learn more about how the rare disease odyssey is evolving with new solutions created by patients and advocates working with researche…

Finding Answers: The Importance of Communicating with Clinicians

The average time for a rare disease patient to be accurately diagnosed is eight years and often requires seeing a variety of specialists. Given the likelihood of a misdiagnosis during this process, it is critical for patients and their caregivers to trust their instincts and advocate for themselves. Hear from experts …

Global Genes LIVE!: Ensuring Inclusivity through Organizational Leadership

Truly diverse research begins with your team. Hear from experts as they discuss the value of having leadership, boards and teams that reflect the patient population being served. They will share insights to help you build a roadmap for making your organization more centered around diversity and inclusion and intention…

Advances in Rare Immunological Diseases

Recent advances in rare immunological diseases have raised the exciting potential of cures for some disorders. Hear from experts about what advances in gene and cell therapies might mean for patients. Speakers: Manish Butte, MD, PhD & Claudia Gonzaga-Jauregui 

Crafting a Career: Making a Fulfilling Professional Life with a Rare Disease

Finding the right job can be challenging, especially for those living with a rare disease. In this session, we explore what opportunities and accommodations are available for landing a fulfilling career. Hear from successful business professionals living with a rare disease and human resources experts on ways to navig…

scroll to top icon