RARE Patient Advocacy Summit

Posted on September 23, 2015 by MaryO

 

I’m on my way to California today.  I was nominated for an award in the 2015 Tribute to Champions of Hope so I’ll be flying to Huntington Beach  for the 2-day  Fourth Annual RARE Patient Advocacy Summit. Follow along with LiveStream.

Saturday night will be the Gala.

Find my name on the list of nominees here: https://globalgenes.org/championsofhope/

One of the very best parts of this trip, though, is that I’m staying with a good friend from the Cushing’s Community.

WOOHOO

 

Filed under: Cushing's, Cushing's Awareness Challenge 2012, Meetings and Conferences, pituitary, Rare Diseases | Tagged: , , , , , , , , , , , , , | Leave a comment »

RARE Patient Advocacy Summit Details and Invitation

Posted on July 2, 2015 by MaryO

We would like to invite you and your community to join us for our fourth annual RARE Patient Advocacy Summit September 24 – 25, 2015 in Huntington Beach, California!  Join the community at this unique event for rare disease patients and advocates: Connect. Educate. Engage. Achieve. 

Registration is open!

This Summit is for every patient, patient advocacy leader, and anyone who cares about rare.  Please take a look at this year’s compelling agenda and consider participating in an event that you won’t want to miss!

 

Why attend? Here’s what you’ll gain:

  • Practical next steps for taking action in the areas of research, legislation, fundraising, and community support
  • Core fundamentals and skills to help you start, grow and strengthen your nonprofit organization
  • Strategies for building online communities and why they are essential for rare disease awareness
  • Understanding the power of genetic data and patient involvement for advancing research for your disease
  • Tools and insights into crafting successful collaborations with researchers, biotech, pharma and the FDA
  • Invaluable connections with advocacy leaders that will help you define and propel your rare disease priorities forward

Register for the Summit and learn more on travel scholarships

Register now and secure your spot at the leading conference for rare disease patient advocates today!  We have a limited number of travel scholarships available, which you may request here.  Scholarship applications will be accepted through July 27, 2015.

 

Want to learn more?  Sign up for our Information Session!

Sign up today for an information session on the Summit where we’ll walk you through the details, the agenda and opportunities to learn and connect, and more on how to share this with your community. Here’s how to register for the information session on July 15, 2015 at 2:00 p.m. PDT/5:00 p.m. EDT. Patients, advocates, advocacy group leaders – all are welcome to participate!

 

Can’t attend in person?

There is no reason you, your organizational leadership or community should miss out!  Sign up to join the conference via Livestream through your computer and learn more about how you can still be an active participant using Twitter.

 

We hope to see you at the Summit!

 

Sincerely,

Kym, Carrie & Lisa

 

Kym H. Kilbourne                                          

VP, Patient Advocacy                                     

kymk@globalgenes.org

 

Carrie Ostrea

Manager, Advocacy/Parent Advocate

carrieo@globalgenes.org

 

Lisa Schill

Advocacy Ambassador/Parent Advocate

lschill@globalgenes.org 

Filed under: Meetings and Conferences, Rare Diseases | Tagged: , , , , , , , | 1 Comment »

2015 Tribute to Champions of Hope Community

Posted on June 26, 2015 by MaryO

tribute-nominee-badge-300x130

 

 

global

 

It’s that time of year again, when the rare disease community looks amongst themselves to identify and nominate agents of change, agents of innovation, and individuals who are working tirelessly on behalf of those affected by one of the 7,000 rare diseases impacting over 350 million people worldwide. Rare disease activists come from many different disciplines and are usually not recognized for the good work that they are doing. This is our opportunity as a community to come together to celebrate and honor those who are setting higher standards, making significant changes and fearlessly attacking challenges differently. Join Global Genes in recognizing these incredible individuals…

RARE Champion in Advocacy

…individuals either in rare disease or within the general public who have been involved in a program, event, legislative effort, or something else extraordinary to advocate for rare disease patients and their families. Nominees could include patients, patient advocates, celebrity, legislators, professional/Olympic athletes, etc.

Read the list of nominees, including MaryO, at https://globalgenes.org/championsofhope/

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RARE Webinar: Leveraging a Rare Disease Center of Excellence

Posted on May 13, 2015 by MaryO

Screenshot 2015-05-13 19.36.00

 

 

 

As many patient advocates continue on their journey to become empowered activists, some may learn and want to consider starting a rare disease center of excellence.

This webinar covers how this can be done, what the obstacles and challenges are, and whether there are other options viewers should consider (like utilizing other centers that already exist).

If you cannot attend this, please register anyway, so we can send you details on the slides and archived event afterwards.

If you have any questions or technically issues during the event, please reach out to Katiem@globalgenes.org.

Filed under: Meetings and Conferences, Rare Diseases | Tagged: , , , | 1 Comment »

YOUR Vote Matters to the Rare Community!

Posted on March 26, 2015 by MaryO

global-champions

 

It’s that time of year again, when the rare disease community looks amongst themselves to identify and nominate agents of change, agents of innovation, and individuals who are working tirelessly on behalf of those affected by one of the 7,000 rare diseases impacting over 350 million people worldwide.

Rare disease activists come from many different disciplines and are usually not recognized for the good work that they are doing. This is our opportunity as a community to come together to celebrate and honor those who are setting higher standards, making significant changes and fearlessly attacking challenges differently.

Join Global Genes in recognizing these incredible individuals by nominating your Champion of Hope today.

All nominees will receive a special recognition gift, and those who win, will be asked to join us in Southern California in September at the Tribute To Champions of Hope Gala. Winners must be available Friday, September 25 and Saturday, September 26.

 

We are looking to YOU to nominate individuals and organizations who are making a difference in the Rare Disease Community!

 

The 2015 Community Nominated Awards 

for the Tribute to Champions of Hope Gala are until April 30th!  

 

 The six nomination categories are:

 

·         RARE Champion in Medical Care & Treatment

·         RARE Champion in Science

·         RARE Champion in Advocacy

·         RARE Champion in Teen Advocacy

·         RARE Champion, Collaborations in Advocacy

·         RARE Champion, Collaborations in Science & Technology

For more details on each award, please click here.

Nominations close on April 30th.  Awards will be determined by nominees’ merit, not by number of submissions.

 Nominate here

 

The 2015 Tribute to Champions of Hope Gala will take place September 26th at the Hyatt Regency Resort & Spa in Huntington Beach, CA. Winners will also be expected to attend an afternoon ceremony on September 25th.

 

Please email any questions or comments to Amy at amyg@globalgenes.org

 

Global Genes is a 501(c)(3) nonprofit organization advocating for rare disease globally.

Filed under: Rare Diseases | Tagged: , | Leave a comment »

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