Pituitary Patient Support Group Meeting

Posted on May 16, 2016 by MaryO

pituitary-meeting

Pituitary Patient Support Group Meeting, Saturday May 28, 2016.

Neuro Endocrine expert Dr. Pejman Cohan will be speaking. “From Diagnosis to Treatments”

There will be time for Q&A and lunch served after the meeting.

Meeting 10:30am-11:45am Lunch 11:45am-1:00pm

Location: John Wayne Cancer Institute- 2nd floor conference room, 2200 Santa Monica Blvd. Santa Monica, CA 90404

Free parking with validation, behind building in the JWCI parking lot.

Please RSVP to Sharmyn at  pituitarybuddy@hotmail.com

Download flyer here.

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

Posted on May 12, 2016 by MaryO

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.

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RDLA’s May Legislative In-Person Meeting

Posted on May 4, 2016 by MaryO

RDLA Congressional Caucus

 

Rare Disease Legislative Advocates in coordination with Rare Disease Congressional Caucus Co-Chairs: Representative Leonard Lance (R-NJ), Representative Joe Crowley (D-NY), Senator Orrin Hatch (R-UT), and Senator Amy Klobuchar (D-MN); and the Office of Senator Mark Kirk (R-IL) will host a briefing on:

 The NIH and FDA: Vital Agencies in the Fight Against Rare Diseases

Wednesday, May 18th, 2016

2:00 pm – 3:00 pm

Senate Capitol Visitors Center Room 201, Washington, D.C., 20004

   REGISTER   

Moderator:  Ellie Dehoney, Vice President of Policy and Advocacy, Research!America

  • The Undiagnosed Disease Program at the NIH
    • William Gahl, M.D., Ph.D, Clinical Director, National Human Genome Research Institute (invited)
  • Precision Medicine – The White House & the NIH
    • Matthew Might, Strategist, Executive Office of the President, The White House, Associate Professor, University of Utah, Associate Professor, Visiting, Harvard Medical School, Founder, NGLY1.org (invited)
  • The Value of Patients to Clinical Innovation at the NIH
    • Kayla Martinez & Dorelia Rivera, NOMID Patient
  • The Role of NIH Funding in Kickstarting Biomedical Innovation
    • Christopher C. Gibson, Ph.D, Co-Founder & CEO, Recursion Pharmaceuticals

Come and enjoy an array of refreshments  or have coffee and snack break while learning about the role of our health agencies.

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The MAGIC Foundation’s Annual Adult Convention

Posted on May 2, 2016 by MaryO

Lots of Cushies go to this meeting. Dr. Theodore Friedman (Dr. F) will be one of the speakers.

The MAGIC Foundation’s Annual Adult Convention

July 21 – 24, 2016

Program

Download the 2016 Convention Program by Clicking Here.

Location

The Westin Lombard Yorktown Center
70 Yorktown Center
Lombard, IL 60148
(630) 719-8000

Hotel Room Rates and Reservations

$104 per night ($115.44 with tax) All rooms have refrigerators!! A limited number of roll-a-ways and cribs are available at no cost so if you need one be sure to request one when making your hotel reservation. To make hotel reservations call the Westin at 888-627-9031, and mention The MAGIC Foundation guest room block, or book online at:https://www.starwoodmeeting.com/events/start.action?id=1602112093&key=3A0B99EE

Airline Transportation

Please contact your local travel agent or search the internet for the most reasonable price. Be sure to search often and book early as great fares sometimes become available. The airport of choice is O’Hare (ORD) which is located closer to the hotel. Midway (MDW) is in Chicago also but a distance from the hotel. Please read “hotel transportation” below before booking a flight to Midway.

Hotel Transportation

Free shuttle service is provided by Windy City Limo’s to the Westin Lombard from O’Hare Airport only! The shuttle schedule is as follows: O’Hare Airport to the Westin – Thursday – 11 am, 1 pm, 3 pm, 5 pm and 7 pm Westin to O’Hare Airport – Sunday – Pickups at 8 am, 10 am, noon, 2 pm and 4 pm Shuttle buses will have a MAGIC sign in the window and will pick up at the following O’Hare locations: Terminal 1, Door 1G * Terminal 2, Door 2E * Terminal 3, Door 3G * Int’l Terminal, Door 5E Pick up will be in the middle aisle when you exit the doors from baggage claim. If you are unable to find the shuttle, you can contact Windy City at 866-949-4639. You may choose to arrive at Midway Airport but there is no free transportation available and a taxi will cost approximately $40.

NOTE: If you use a power wheelchair/scooter or other device which cannot be folded and need wheelchair accessible transportation, you can contact Special Needs Chicago at (630) 668-9999 or visit their website to make arrangements online, specialneedschicago.org

Register here: https://www.magicfoundation.org/annual-adult-convention/

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VIDEO: Cushing’s syndrome still difficult to diagnose

Posted on April 7, 2016 by MaryO

endo2016

 

In this video exclusive, Hershel Raff, PhD, professor of medicine, surgery and physiology at the Medical College of Wisconsin and scientific director and clinical research supervisor at Aurora St. Luke’s Medical Center, discusses his presentation on the laboratory diagnosis of Cushing’s syndrome.

According to Raff, Cushing’s syndrome is the most enigmatic disease in endocrinology and one of the most difficult to diagnose.

The use of late-night salivary cortisol for diagnosis has recently become popular although the test has been around for many decades. Patients can send samples by mail to have their cortisol measured in a laboratory to determine whether they have Cushing’s. According to Raff, the test is about 95% accurate in making a diagnosis.

View video at http://www.healio.com/endocrinology/adrenal/news/online/%7B5545e9a6-7475-454a-94d5-3994ac8beec5%7D/video-cushings-syndrome-still-difficult-to-diagnose

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