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, Meetings and Conferences, pituitary, Rare Diseases | Tagged: , , , , , , , , , , , , , | Leave a comment »

Johns Hopkins Pituitary Patient Day

Posted on September 6, 2015 by MaryO

Join us on Saturday, September 19, 2015

7th Annual Johns Hopkins Pituitary Patient Day
Saturday, September 19, 2015, 9:30 a.m.
Location:
Johns Hopkins Mt. Washington Conference Center
5801 Smith Avenue
Baltimore, MD 21209
map and directions

This is a free event, but seating is limited. Reserve your space now: Please R.S.V.P. by September 9, 2015 by email (preferred) to PituitaryDay@jhmi.edu  or by calling Alison Dimick at 410-955-3921.

Agenda

Time Topic Speaker(s)
9:30 – 9:55 AM Registration
9:55 – 10:00 AM Welcome and acknowledgements Roberto Salvatori, M.D.
10:00 – 10:25 AM Different kinds of pituitary adenomas: non-functioning, acromegaly, Cushing Gary Wand, M.D.
10:25 – 10:50 AM New and old medications for pituitary disease (acromegaly, Cushing, prolactinoma, hypopituitarism) Roberto Salvatori, M.D.
10:50 – 11:10 AM A patient’s story TBA
11:10 – 11:30 AM The eye and the pituitary gland: Why it is important to see the right doctor Dan Gold, D.O.
11:30 – 11:50 AM Surgery for pituitary tumors: Pictures from the operating room in acromegaly, Cushing, non-functioning masses Gary Gallia, M.D., Ph.D.
11:50 – 12:10 PM Radiation therapy for non-functioning ademomas, acromegaly or Cushing: Not so scary after all Lawrence Kleinberg, M.D.
12:10 – 12:30 PM Psychological issues in Cushing, acromegaly and other pituitary disease Tracy Vannorsdall, Ph.D.

 

Filed under: Cushing's, Meetings and Conferences, pituitary, Treatments | Tagged: , , , , , | Leave a comment »

Webinar: Diagnosis and Management of Acromegaly: A Clinical Update

Posted on July 19, 2015 by MaryO

Presented by
Lisa Nachtigall, MD
Co-director Neuroendocrine Clinical Center
Massachusetts General Hospital

Register Here

After registering you will receive a confirmation email with details about joining the webinar.

Contact us at webinar@pituitary.org with any questions or suggestions.

Date: Monday, July 27, 2015
Time: 2:00 PM – 3:00 PM Pacific Daylight Time

Presenter Bio
Lisa B. Nachtigall, MD, is an Associate Professor of Medicine at Harvard Medical School, the clinical co-director of the Neuroendocrine Clinical Center at Massachusetts General Hospital and course director in Clinical Neuroendocrine at Harvard Medical School.

Dr. Nachtigall earned her medical degree from New York University (NYU) School of Medicine in New York City. She completed her internship and residency in internal medicine at Bellevue Hospital Center/NYU school of Medicine, and a clinical fellowship in endocrinology and metabolism, as well as a research fellowship in reproductive endocrinology at Massachusetts General Hospital/Harvard Medical School.

Dr. Nachtigall’s work has been published in the New England Journal of Medicine, the Journal of Clinical Endocrinology and Metabolism, Neurosurgery, Pituitary, and the Clinical Endocrinology among others. She serves on the editorial board of Pituitary and as an ad hoc reviewer for many endocrine journals. Dr Nachtigall has been a presenter at national and international medical conferences, and she is currently an investigator on several clinical studies of acromegaly and pituitary tumors.

Filed under: Meetings and Conferences, pituitary, Rare Diseases, Webinar | 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 »

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 »

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