The New Normal: Patient Communities Drive Innovation
Rare disease advocacy communities and patients are reshaping care and support programs as well as research through innovation. Join leading patient advocates to learn the ins and outs of patient-driven innovation to change outcomes. Speakers: PJ Brooks, PhD, Kevan Chandler, Deborah Requesens PhD, & Luke Rosen
Romance While Rare
Dating and maintaining a strong relationship can present some unique challenges when also managing a rare disease. Strength, support, and joy can come from the bonds of a romantic relationship, whether new or established. Panelists will address relationship milestones such as how much information to share when dating,…
Challenge Your Limits
A panel of strong, creative patients and advocates moderated by [The Two Disabled Dudes][1] will discuss how they thrive while navigating life with a rare disease. Speakers: Kyle Bryant, Sean Baumstark, Onno Faber, Neena Nizar, PhD, Katie Stevens [1]: https://twodisableddudes.com/
Eating Well Taking Care of Yourself through Nutrition
Successful management of certain rare diseases includes adherence to a strict diet that limits consumption of fat, protein and/or carbohydrates. Learn how to read nutrition labels, utilize mobile nutrition apps created by advocacy organizations, and get tips on navigating work functions and enjoying social engagements…
RARE Patient Advocacy Summit
_**Please join us for our**_ 3rd Annual “RARE Patient Advocacy Summit_”_ held on **September 11-12, 2014** at the Hyatt Regency in Huntington Beach, California. _**Empowering Patient Advocates to Become Successful ****Activists**_ [Download Agenda][1][ (PDF) ][2][Download Speaker Bios][3] (PDF) Download PDF slides: [D…
