Utah’s 2015 Rare Disease Day is going to be BIG this year, and we’d love for you to be a part of it.  🙂

February 27, 2015 — Utah World Rare Disease Day Statehouse Event 

3:00 PM – 5:00 PM at the Utah State Capitol Building Rotunda.

An event for patients, caregivers, legislators, and other stakeholders about the challenges and triumphs of living with rare diseases in the great state of Utah.

Registration encouraged but not required.  1,500 person capacity.

February 28, 2015 — Inaugural Utah Rare Disease Day Symposium

12:00 PM – 5:00 PM at the University of Utah, Eccles Health Sciences Building.

A TED-style event to inspire, motivate, and spark collaboration among the rare disease stakeholders — patients, healthcare providers, researchers, companies, institutions, legislators — in our state.

Confirmed speakers include:

• Dr. Dean Li, Associate Vice President for Research and Chief Scientific Officer for University of Utah Health Sciences
• Dr. Ed Clark, Chief Medical Officer of Primary Children’s Hospital and Chair of Pediatrics
• Dr. Kevin Jones, Professor and Author of “What Doctors Cannot Tell You”
• Dr. Gholson Lyon, Cold Spring Harbor Laboratory and Utah Foundation for Biomedical Research
• Dr. Reid Robison, Chief Executive Officer of Tute Genomics
• Dr. Robert Selliah, Chief Executive Officer of American Med Chem
• Dr. Christopher Gibson, Chief Executive Officer of Recursion Pharmaceuticals
• Crystal Shearman, producer of “Undiagnosed: Medical Refugees” film
• Gina Szjanuk, Founder of Rare and Undiagnosed Network
• Season Atwater, Founder of Aware of Angels
• Amylynne Santiago Volker

Registration required.  600 person capacity.  Event will be live streamed and recorded for distribution.

Also, a sponsorship packet for the Inaugural Rare Disease Day Symposium is attached.

We’re anticipating 600 attendees for the symposium alone.

Please let me know if you are interested in sponsoring the event, as we can certainly work with you.

These events will also serve to raise awareness for the need of a Rare & Undiagnosed Clinic at the University of Utah.

The clinic is a community initiative under development at the U/PCH to serve the rare and undiagnosed patients in our five state, intermountain region.

Through thorough, coordinated evaluation and ongoing medical care, rare patients will receive diagnoses faster, access available treatments sooner, and make more informed decisions for the future of their families.

The broader community will benefit from lower health care costs and lower economic burden on working rare families.

Thanks for your consideration and support!