Registration Open for Regional Legislative Conferences and In-District Lobby Days

Rare Disease Legislative Advocates will host In-District Lobby Days to facilitate meetings for rare advocates across the country with their elected federal officials during the summer Congressional recess (July 18th through September 5th).

Registration is open through July 1st.

Federal elected officials need to hear regularly from constituents affected by rare disease.  Meeting with your Representative and Senators throughout the year is critical to building a relationship.  These meetings are an opportunity to invite them to join the Rare Disease Congressional Caucus and to highlight legislation that could be beneficial to the rare disease community.

To help advocates prepare, we are holding regional Legislative Conferences in Boston on June 28th and in both Chicago and Seattle on June 30th. These half-day conferences will feature remarks from federal elected officials, academics, patient advocates and other rare disease stakeholders.  Lunch will be provided. Registration will be available here through June 22nd. Don’t miss the opportunity to learn and network with other local advocates!

We will also hold two preparatory webinars.  The first, to be held on June 16th at 2pm ET/11am PT, will provide an overview of the regional Legislative Conferences and In-District Lobby Days. The second, to be held on July 13th at 2pm ET/11am PT, will cover In-District Lobby Days in more detail including legislative issues which advocates may want to raise in their meetings.

RARE Patient Advocacy Summit

 

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

 

RARE Patient Advocacy Summit Details and Invitation

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 

Rare Disease Day, 2015

rare-disease-day-2015

 

On February 27, 2015, the National Institutes of Health (NIH) will celebrate the eighth annual Rare Disease Day with a day-long celebration and recognition of the various rare diseases research activities supported by the NCATS’ Office of Rare Diseases Research, the NIH Clinical Center, and other NIH Institutes and Centers; the Food and Drug Administration’s (FDA) Office of Orphan Product Development; other Federal Government agencies; the National Organization for Rare Disorders; the Genetic Alliance; Global Genes; and Uplifting Athletes. Rare Disease Day at NIH will be held in the Masur Auditorium (Clinical Center, Building 10) from 8:30 a.m. to 5:00 p.m. Attendance is free and open to the public.

Rare Disease Day at NIH is appropriate for patients and patient advocates, health care providers, researchers, industry representatives, and government employees. We will have talks from academic and government scientists, industry representatives, and the lay community.

In addition to the various scheduled talks (see agenda), posters and exhibits from many groups relevant to the rare diseases research community will be displayed. In association with Global Genes, we again encourage all attendees to wear their favorite pair of jeans.

The Rare Disease Day 2015 event will also be webcast and Clinical Center tours will be available for in-person attendees.

Register Here.

 

2nd Annual Patient Advocacy Summit

RARE

Come join us for our 2nd Annual “RARE Patient Advocacy Summit
to be held on Friday, September 20, 2013
at The Balboa Bay Club & Resort in Newport Beach, CA.

Register today!

Seating is limited for in-person participation.

Webcast registration available for those unable to attend in person.

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From Symptom to Cure:  The Journey of a Rare Disease Advocate ~ Equipping Patients to Make a Difference

Join Global Genes | RARE Project for a unique and interactive educational experience at our 2nd Annual Patient Advocacy Summit on Friday, September 20, 2013.   There is no charge to participate in this event.

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 to provide the discussion, insights and tools to move down this advocacy path, equipped and prepared.

The 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 most effective in helping advocate for their disease/disorder.

Attendees will:
  • Learn how to get started: obtain 501c3 status, write grants, leverage PR effectively and utilize social media to spread your message.

  • Collaboration: Understand how to successfully work with other rare disease stakeholders, patient advocates, the FDA and other government entities.

  • Learn the importance of patient registries, the different types of registries and how advocates can support them.

  • Explore the role of foundations and advocates related to scientific discovery and drug development.

  • Gain a broad understanding of the scientific process, including diagnostic and research methodologies and collaborations with academia and industry.

At the end of this day-long event, each participant will gain perspective on the complexities and questions that need to be considered in order to become effective advocates for the rare disease patients and help advance therapies in the rare diseases we represent.

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 today!

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Hotel and Travel Information

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Sponsor Information

To become a sponsor or for more information, please contact Nicole Boice.  We look forward to seeing you at this year’s summit.

 View videos from our 2012 event.

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