2013 RARE Patient Advocacy Summit Agenda

Webcast Session

Partners, Politics, and Platforms – Wendy White, Siren Interactive
An uplifting introduction to the day’s events and an invitation to fully participate, sharing your ideas and experiences and providing feedback to strengthen our community. Wendy White, the caregiver of a child with a rare disorder and founder of a marketing firm specializing in rare, will illuminate the importance of understanding and using the partners, politics, and platforms that are available. She’ll also explain how we will be gathering ideas for discussion at the end of the day “TED-like” session.
 view video First Put on Your Own Oxygen Mask 
In case of emergency, flight attendants instruct you to put your own oxygen mask on before you try to help your children or other passengers. A mother might think, “They can’t tell me what to do. I’d put the masks on my children first.” But how much help could this mother offer her children if she passed out while trying to put their masks on? This session will explore the psycho/social aspects of caregiving and provide resources, ideas, and practical advice on how to strike a balance between caring for others and caring for you.

Jane Meier Hamilton, MSN, RN – Partners on the Path
Panel Members:

  • Donna Appell – Founder & President, Hermansky-Pudlak Syndrome Network Inc.
  • Mindy Cameron – Director, Parent Project Muscular Dystrophy 
Effective Collaboration: The Path to Reaching Our Goals
Dr. Steve Groft, one of the leaders in the rare disease community and a recipient of the Henri Termeer Lifetime Achievement Award 2013, will provide commentary on why collaboration among all constituents is critical – and how it can be achieved. This session will discuss the upcoming challenges for our community and what we can do to work better together to make an impact.
  view video Partners Panel: Creating Strong Alliances
The advocacy landscape for many disease states is fractured, with new organizations being created all the time and precious resources of time, talent and treasure diverted to internal politics when they might be better used if everyone could find common ground and find ways to work together toward clear goals. This session will provide an overview of how and why to start a nonprofit. We’ll also explore ways to partner with others. How do you find other advocacy groups, foundations, and support organizations to work with? How do you work with industry? How do you get prepared to work with the FDA and government agencies? What services are available to help you on your patient/caregiver journey?

Bill Strong – Gwendolyn Strong Foundation
Panel Members:                                                          

  • John Stone – Executive Director, Child Neurology Foundation
  • Keegan Johnson – President and Chairman of the Board, Foundation for Prader-Willi Research
  • Susan Kahn – Executive Director, National Tay Sachs and Allied Diseases Association
RARE Foundation Alliance
Find out the benefits of collaborating across disease states — as a rare community — to create a strong collective voice.

  • Carrie Ostrea – Advocacy Manager, Global Genes | RARE Project
 view video Platforms Panel: Connecting Your Community Online 
Technology is changing the way we all communicate and work together. This provides both challenges and opportunities. Learn about the pros and cons of different patient registries, websites, community forums, crowd-sourced funding, and science platforms. This will be an interactive session with panel members offering advice on how to select the best platform for your group and participants sharing their experiences.

Barbara Lavery – President, Zoomedia
Panel Members:

  • Ben Heywood – Co-Founder & Chairman, PatientsLikeMe
  • Kyle Brown – Founder & CEO, Patient Crossroads
  • Amy Gleason – COO, CareSync
 view video Policy Update
Get the highlights on political issues that may impact the rare disease community, including healthcare reform. 

  • Julia Jenkins – Rare Disease Legislative Advocates       
Drug Development 101
More and more advocacy organizations are funding research into rare disease. Traditional research organizations work toward publication of scientific papers and sometimes patents. Companies using this initial institutional research may decide to apply the research to areas beyond or separate from the specific rare disease for which the funding was given. Patient advocacy groups may find themselves in the quandary of funding research that may not result in the development of a treatment for “their” disease. Without a proper understanding of the intellectual property rights created by the work that they are funding, the patient groups could find themselves left behind and without a seat at the table during the research-to-development process. Gain a broad understanding of the scientific process, including diagnostic and research methodologies and collaborations with academia and industry. Participants will explore the role of foundations and advocates related to scientific discovery and drug development. Learn how you can make a difference by identifying good targets and asking the right questions of researchers.Moderator: Ian Phillips, PhD, DSc, FAHA – Director of the Center for Rare Disease Therapies, Keck Graduate Institute of Applied Life Sciences
Panel Members:

  • Deborah Geraghty, PhD – Founder & VP, Cydan Development Inc
  • James McLaughlin – Venture Associate, 3rd Rock Ventures
  • Ethan Perlstein, PhD – Independent Scientist, Molecular Sciences Institute
  • Dr. David Pearce – Director, Sanford Children’s Health Research Center

 view social
media video

view PR video

view fundraising video

Conversation with the Experts on Social Media, Fundraising and PR
Wherever you are in your journey, this session will help you expand the reach of your organization. Get help from the experts on how to increase your social media skills, more effectively use PR, and raise funds to support your work. This conversation will help you move forward on your own path.

  • Social Media: Melissa Hogan – Caregiver, Saving Case 
  • PR: Chris Hempel – The Addi and Cassi Fund 
  • Fundraising: Tanya Renne – Orchid Giving/Rare Disease 


 View videos from our 2012 event.