When you hear mention of South by Southwest (SXSW), you typically think of the large scale music festival that hits Austin every spring.  However, SXSW has grown dramatically and there are now many more components to the annual festival.

We have a fantastic opportunity to speak at SXSW this year during both the EDU and Interactive Sessions of the festival, but we need your help! With over 700 entries in the edu session and 3,000 for the interactive session, we need you to vote and ask all of your family and friends to vote to have our session included!! Voting begins today and ends Friday, September 6 at midnight. You will need to create a panel picker account and you can vote once for as many sessions as you’d like.  Sign up and vote today!

 

More information for our EDU Session:

Using Social Media to Navigate Healthcare

 

Medical professionals, patients, and savvy navigators of the healthcare system will discuss resources to use when traditional channels are not effective or timely when a person or a family is faced with a medical crisis. The healthcare system can be daunting to those unfamiliar with the language and culture of the medical community. The benefits of online education, support groups, blogs, radio blog shows, Facebook groups will be explored. We will give specific examples of how individuals and families can benefit from utilizing social media on their diagnostic journey. We will discuss the benefits of having a patient advocate, whether it be an individual or an online community. We will talk about how to protect your privacy in this open and public forum. From finding a diagnosis to negotiating with healthcare networks, third party payers, and providers to have services covered, we will delve into the pitfalls that hinder effective care, and then provide solutions. Click the photo to vote for this session!

More information on our Interactive Session:

On a Diagnostic Journey

 

Navigating the healthcare system when the diagnosis is not clear is a daunting process. Individuals with undiagnosed disorders lack identity and are often isolated and forgotten. This panel will provide resources to assist those with undiagnosed disorders in finding answers through advocacy and collaboration. On the panel are both individuals who know the undiagnosed journey, and those whose mission it is to guide and advocate for them. Utilizing social media, Skype, online support groups, blogs, and radio blog shows the panel members have been able to reach out “without walls” to help the undiagnosed community.

We also highly recommend that you leave comments telling others why they should vote for our topic.  The public can scan through all of the proposals and seeing comments from our rare and undiagnosed community would help to promote our panel and increase our chances of being represented.  You are welcome to comment whatever you’d like, but some comment suggestions include writing  about your story and how U.R. Our Hope has helped you or your family, how important awareness of rare and undiagnosed diseases is, how important online and social media resources are on a diagnostic journey, and the importance of having patient advocates.