We don’t have to tell you that a rare disease diagnosis changes everything.
Our foundation works tirelessly to provide you and your family with resources and information to help you become better equipped to tackle all of the challenges a rare disease diagnosis brings. While it is always insightful and meaningful when we meet as a group or connect via our social media platforms, it is equally powerful when we meet individuals and families living with rare diseases other than our own. We can share stories, best practices, compassion and build a connection with our broader rare disease family.
That is why as a partner in the Global Genes Foundation Alliance, we are pleased to share information about The Fourth Annual RARE Patient Advocacy Summit on September 24 – 25, 2015 in Huntington Beach, California hosted by Global Genes. A meeting for all rare patients and families, we  encourage you to register to attend, so that you can connect with other patients, caregivers, and advocates.
The Global Genes RARE Patient Advocacy Summit is for YOU – rare patients and caregivers, rare family and friends!

Here’s a glimpse of what you’ll learn:

Inspiration from our keynote speaker Bonner Paddock an elite athlete and patient who teaches us that life is never limited for any of us.
The 10 things you need to do once you have a diagnosis.
How, as an individual, you can help pursue research for your disease.
How can information about yourself – your “data” help drive research and ultimately help find treatments and cures?
Insight on navigating insurance billing and reimbursement for testing.
Practical tips on how to manage your medical information, so you can become an educated, empowered patient who is equipped to be a partner in you or your loved ones care.
If you can’t attend in person, register to watch live on your own computer and participate in conversations via Twitter! Once registered, you will also receive an email after the Summit to view the recorded sessions at you own convenience. Learn more.
To Check out the full agenda here. This is a fantastic opportunity to connect with members of the rare disease community including patients, caregivers, industry, researchers and leaders and gain strength and inspiration from those connections – new and old.
With regards,
Gina Szajnuk

Link to Global Genes 2015 Summit

About Global Genes:
Global Genes is a leading global rare disease patient advocacy organization. The group’s mission is to eliminate the challenges of rare disease, by providing patients with educational tools, building awareness, providing critical connections and support to people and resources, and through investment in technologies that will positively impact affected patients and families. Recognized worldwide by the Blue Denim Genes Ribbon™, Global Genes unites experts, advocates and patients of all ages to stand together in hope for treatments and cures for the estimated 7,000 rare and genetic diseases that impact approximately 30 million Americans and over 350 million people worldwide.