Skip to main content

Global Genes! Can we count on you? RARE Advocacy



A major challenge facing the rare and genetic disease community is the lack of a forum for significant, open, and regular communication on common issues of broad interest. While each rare disease is unique from a scientific standpoint there are many other issues which span the entire rare community - resources, policy, funding, research, patient quality of life, clinical care, payers, etc.
Global Genes | R.A.R.E will hold a Patient Advocacy Summit on September 28, 2012, from 9 a.m. to 3 p.m. at the Balboa Bay Club & Resort. Patient advocates will engage, learn, and discuss a variety of topics that directly affect them leading to collaborations that will benefit the entire rare community.
Topics of Discussion:
  • RARE Advocacy - You Have the Power
  • Innovative Technologies & Science
  • New Non-profit Business Models
  • Building Healthy Rare Disease Communities
  • Public Communication & Media Engagement
The event will be highly interactive. Panels and discussion will be prioritized over formal lectures and presentations. The outcome is not pre-set, it will be a collective effort based on the interactions of the participants. This annual summit is open to all in the rare disease community that wish to participate and is free.
Tentative Agenda
Friday, Sept 28, 2012 | 9am - 3:00pm
9:00Introductions - sharing our common ground
10:00RARE Advocacy - You Have the Power
10:50Break
11:00Innovative Technologies & Platforms
12:00Working lunch - table-topic focused networking
1:00Building Healthy RARE Disease Communities
2:00Break
2:15Communicating with the Public
2:45Collaborations, re-cap, next steps, wrap up
3:00Closing remarks
Sign Up
Finding, aligning, and acting on this common ground will further empower the rare community to establish a powerful shared, vibrant, and global voice that will lead to increased awareness, support, actions and response.
Sign up today via
Remember... Research is the key to your cure!

Comments

Popular posts from this blog

Amazing patient advocacy....and needed media for this issue. Thank you Terri Witter!

Q & A WITH PORPHYRIA EXPERT, DR. BRUCE WANG, UCSF

Q & A WITH PORPHYRIA EXPERT, DR. BRUCE WANG, UCSF 
The APF asked our Facebook friends for their top questions they would ask a porphyria expert.
 The following questions were submitted to Dr. Wang for his responses ... Q. Does EPP give us bad teeth? Also, do people with EPP get stomach pains or is that with the other porphyias? A. The porphyrin that accumulates in EPP patients is protoporphyrin IX, which does not cause discoloration to teeth or abdominal pain.
 The type of porphyria that leads to discolored teeth is Congenital Erythropoietic Protoporphyria. The porphyrias that lead to episodic abdominal pain attacks are the acute hepatic porphyrias. Q. I have EPP and I have a severe reaction on my hands and lips. Do I seek urgent care? Also, what can you even do when you burn your lips? A. The acute reactions to sunlight in EPP can be very severe and, unfortunately, there are not many effective options to treat the symptoms. Nonsteroidal anti-inflammatory drugs (NSAIDS such as ibup…