Rare Disease Week, 2014

rare-disease-2014

You are invited to join RDLA and 200 rare disease advocates in Washington, DC for Rare Disease Day (Week), February 25 – 28, 2013.  Below is an overview of the events, registration will be coming soon.

Tuesday, February 25th:
8:15 am – 4:30 pm Legislative Conference 
National Press Club, 529 14th Street NW, Washington, DC

5:30 pm – 9:30 pm 4th Annual Rare Disease Day Documentary Screening & Cocktail Reception
Carnegie Institution of Science, 1530 P Street Northwest, Washington DC

Wednesday, February 26th:
7:00am -8:30 am Lobby Training Breakfast
Top of the Hill, Reserve Officers Association, One Constitution Avenue, NE, Washington DC

9:00 am – 5 pm Capitol Hill Meetings with Members of Congress & Congressional Staff

Thursday, February 27th
9:00 am – 5 pm State Delegation Hill Meetings (Optional) Advocates drop by Congressional Offices and attend meetings on behalf of advocates who are too sick or unable to come to DC

TBD, Rare Disease Congressional Caucus Briefing

Friday, February 28th:
RDD@NIH Rare Disease Day at the National Institutes of Health – 2014 event information & registration coming soon

All events are free and open to the public, registration coming soon.

Hotel Room Block: Dupont Circle, on the Red Metro line:
Embassy Row Hotel2015 Massachusetts Ave, NW, Washington DC
$149/night single $169/night double + 14% DC Tax    Click Here to book your hotel ! or Call (202) 939-4208 & ask for the EveryLife Foundation Room Block
Complimentary internet in guest rooms, Complimentary breakfast
There are a limited number of rooms available at the discounted rate.  Discounted rates expire on Monday, February 3rd.

Click Here to watch the video presentations from last year’s Legislative Conference 

If you can’t join us in DC, please stay tuned for ways to share your personal story with Congress. 

Rare Disease Week

The House & Senate Congressional Calendars came out this week!

Congress is in session during Rare Disease Week – SaveTheDate!

Feb. 25th – Feb. 28th, 2013

4 Days of Rare Disease Events in Washington DC!

More info coming soon.

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.

Webinar: Advances and Limitations of Endoscopic Pituitary Surgery

Presented by Paul Gardner, MD

Check back with us for registration information or contact us at webinar@pituitary.org.

Date: Wednesday, December 4, 2013
Time: 9:00 – 10:00 AM PST

After registering you will receive a confirmation email containing information about joining the Webinar.

November 15 Webinar: “Pituitary Disorders and the Family”

Webinar: “Pituitary Disorders and the Family”
Presented by Jamie L. Banker, Ph.D., Director of Counseling Psychology California Lutheran University
Date: Friday, November 15, 2013
Time: 12:00-1:00 PM PDT 

Seating is limited, register today!
https://www4.gotomeeting.com/register/127537863?utm_source=newsletter_45&utm_medium=email&utm_campaign=webinar-announcement-pituitary-disorders-and-the-family

After registering you will receive a confirmation email containing information about joining the Webinar.
Webinar Information
Chronic illness systemically affects individuals and families, in that the illness impacts the whole system, rather than just the individual with the diagnosis. Health problems can create or exacerbate conflict within a family or support system (Ruddy, Borresen, & Gunn, 2008). This is also the case within families with a family member with an endocrine disorder.

Historically, research on medical illness focused mainly on the identified medical patient, but recent literature shows an ever-growing interest in understanding the physical and mental toll those managing and caring for close relatives with a serious illness or disability (Feigin, Barnetz, & Davidson-Arad, 2008). Family systems theories have influenced this turn, as it becomes clear that focusing on a problem with one family member acknowledges only one part of the affected system.

In this presentation Dr. Banker will talk about what is meant by the “family system,” what is meant by “collaborative’ and “integrated” care, Dr. Banker will identify ways pituitary disorders impact the family system, She will discuss ways family members can positively impact healing and learn what can be the role of a “family therapist” in helping families affected by a pituitary tumor or other endocrine disorder.

Dr. Banker will also talk about her most recent research connecting the early childhood trauma and pituitary disorders.

Learning Objectives
▪ Learn about the primary effects of chronic and/or serious illness on the family
▪ Learn what is meant by the “family system”
▪ Learn what is meant by “collaborative’ and “integrated” care
▪ Identify ways pituitary disorders impact the family system
▪ Learn ways family members can positively impact healing
▪ Learn what can be the role of a “family therapist” in helping families affected by a pituitary tumor or other endocrine disorder

Presenter Bio
Jamie Banker is the Director of Counseling Psychology Masters program and Assistant Professor of Psychology at California Lutheran University in Thousand Oaks California. She is a Licensed Marriage and Family Therapist and has a special interest in integrated behavioral healthcare. She completed a clinical master’s degree at University of San Diego and completed her doctoral degree at Virginia Tech. Dr. Banker was a doctoral intern at Dartmouth College Family Medicine Residency. Dr. Banker has worked in three integrated primary care practices as a therapist and a lecturer. She has published scholarly articles and a few book chapter on integrated healthcare. Now her focus is on training Marriage and Family Therapy students to work in integrated behavioral healthcare sites. She is an AAMFT approved clinical supervisor. Dr. Banker’s research agenda centers on women’s and family’s health. It encompasses topics that are both underserved and burgeoning in the fields of psychology, marriage and family therapy, behavioral medicine, and public health. Dr. Banker’s primary research interests are collaboration between family therapists and medical professionals, family health and training integrated care professionals. These interests all fall under the larger umbrella of improving individuals’ overall healthcare. Her research agenda is focused on decreasing the gap between medical and mental health assessment and treatment. Dr. Banker’s current research is on understanding postpartum depression and disorders of the endocrine system from a biopsychosocial model.