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.

 

How to spot a monkey in a white coat

Tip #3:  If at first you see a monkey, get a second opinion.   If you see a monkey on the second try, get a third opinion.  To limit the number of monkeys you see, talk to other patients that are having the same problems as you.  If they managed to see a good doctor, try and see their doctor.

Why is it good to listen to other patients?  Because patients aren’t monkeys.  They have been in your shoes and have already done a lot of the hard work for you.  I learned this when I had Cushing’s.  After seeing a large number of monkeys, it was other patients that finally sent me to a really good doctor.  And he listened to me and did tests and took all the evidence into account when trying to get me better.  And he succeeded.

Read the entire post at How to spot a monkey in a white coat.

Cushing’s Patient Awareness Day Invitation

patient-day-sf

 

 

Location: Sheraton Fisherman’s Wharf 2500 Mason Street, San Francisco, California

The goal of the program is to Educate, Empower and Support. We will:
-Provide education on how Cushing’s Syndrome affects your body
-Share information and educational resources
-Enhance your support and referral network

The day will focus on endogenous Cushing’s, a condition caused by high cortisol in your body. The day will not cover exogenous Cushing’s caused by steroids taken for various health conditions including asthma, arthritis or lupus.

Hosted by Kate Tully, R.N. and Katherine Waidner, R.N.
Cushing’s Patient Advocates-Corcept Therapeutics

 

Brigham & Womens Hospital’s Pituitary Day 2014

BWH_Pit_Day

In partnership with the Brain Science Foundation, the Brigham and Women’s Hospital Pituitary Neuroendocrine Center is pleased to present

Pituitary Day 2014

Saturday, March 29, 2013
8 AM – 5 PM
Bornstein Amphitheater
at Brigham & Women’s Hospital
75 Francis Street
Boston, MA

This conference is intended to unite patients, caregivers, family and friends with leading clinicians, researchers, nurses, and other experts to discuss the latest in pituitary diagnosis and treatment. All patients, caregivers, family and friends are welcome!

For more information, please visit brainsciencefoundation.org or call Sarah Donnelly at 781-239-2903.

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.

divider

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!

divider

Hotel and Travel Information

divider

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.

%d bloggers like this: