The Importance of Collaboration in Rare Disease Research

While operating strictly in a lab can provide a laser focus in research, it comes with the risk of not having a complete understanding of what matters most to children and families affected by rare diseases. To gain a deeper insight into the disease’s manifestations, it’s worth exploring the perspectives of families and Program Advocacy Groups (PAGs). This message was strongly emphasized during the recent Global Genes Advocacy Summit in San Diego, where PAGs and families of rare disease patients gathered to learn how to collaborate more effectively with investigators to advance research efforts.

Global Genes provides hope for the more than 400 million people affected by rare disease around the globe. They help patients find and build communities, gain access to information and resources, connect to researchers, clinicians, industry, government, and other stakeholders, share data and experiences, stand up, stand out, and become effective advocates on their own be, half.

On September 19-21, 2023, the Global Genes Rare Advocacy Summit convened one of the world’s largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners, and allies

 Learn about the top 10 takeaways from the Global Genes Conference and about the Rare-X research efforts.

Schedule a PI feedback session with our Neurology Family Advocacy Council – Research Group.