A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Tuesday, August 12, 2014

RARE Patient Advocacy Summit - and Online!

I saw this on the Global Genes webpage and wanted to share it.

2014 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

A rare diagnosis changes everything. It crashes plans and dreams, knocks you off your feet, and requires a continual investment of time and money as you try to determine what should be your next step. The purpose of the RARE Patient Advocacy Summit is to help patient ADVOCATES become successful ACTIVISTS and provide the discussion, insights, and tools to move down this advocacy path, equipped and prepared.

Our Patient Advocacy Summit will offer practical advice, case studies, and networking opportunities as we learn from one another. The goal is to have patient advocates walk away with a better understanding of the challenges they will face and where they can be the most effective in helping advocate for their disease/disorder.

You will:
  • Hear from experts on a variety of topics affecting the rare disease community
  • Understand and create strategies for challenges facing caregivers
  • Be introduced to new science advances
  • Learn how to become an unstoppable advocate and how to build an effective organization
  • Become equipped and educated around successful lobbying
  • Understand Drug Development – Why patients are playing a critical role and what that is
  • Have opportunities to network with other rare advocates and rare industry partners
By attending this two-day event, you will meet new friends and colleagues, gain a new perspective on the complexities and questions that need to be considered in order to become effective advocates for rare disease patients and you’ll be ready to help make advances for the rare diseases we represent.
For those not able to attend in person, you will be able to join via Live Stream.

In-Person registration includes:

* Thursday Patient Advocacy Summit (12:00 pm to 6:00 pm)
* Friday Patient Advocacy Summit (8:00 am to 6:00 pm)
* Friday: Networking event (evening)
* Saturday: Day of Beauty (Advocates only)

Who Should Attend:
>Rare disease patients, caregivers, family members and friends
>Patient advocates

Whether you are new to this rare disease journey or an experienced traveler, an individual advocate or part of an existing rare disease organization, you will gain value from this event.

Register HERE

Thank you to our generous sponsors!


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