Webinar: Diagnosis and Management of Acromegaly: A Clinical Update

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.

RARE Webinar: Leveraging a Rare Disease Center of Excellence

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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.

Webinar: How to Discuss Genetic Disease with Your Loved Ones

Date:  April 1, 2015
Time:  11:00 am PT / 2:00 pm ET

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There are currently about 7,000 rare diseases identified worldwide, and approximately 80 percent of these are caused by genetic changes. But genetics is a topic that not all of us are familiar with.

This webinar covers the basics of the underlying genetics of rare disease and provides viewers with the strategies and advice to discuss them with the ones they love.

Panelists will share strategies they have used to explain genetic disease, challenges they faced, and helpful resources.

Panelists:
jenna_recombine Jenna Miller, MS, CGC, Genetic Counselor, Recombine

Jenna Miller is a certified genetic counselor at Recombine, a genetic testing company based in New York, NY. She works closely with families seeking preconception and prenatal genetic carrier screening and noninvasive prenatal screening. She also assists physicians and genetic counselors to facilitate appropriate genetic testing procedures. Jenna is passionate about genetics education; her Master’s thesis project involved developing and teaching a Genetics 101 class for student inmates at a maximum security women’s prison. Jenna is an advocate for informed consent, ethical approaches to genetic testing, and support of families affected by genetic conditions.

cyndiCynthia Frank, Director, Patient Advocacy & Meetings, Nat’l Gaucher Foundation

Cyndi is a long-standing member of the Gaucher community and has participated in many clinical trials to help get treatments to market.  She is an NGF Mentor and advocate for Gaucher patients and raising awareness through speaking at conferences, meetings and events, including NGF and other rare and genetic disease-organization meetings, LSD symposiums, and industry and pharmaceutical conferences and educational events.  She serves on multiple boards and committees for many organizations, including the Global Genes Advocacy Leaders Group and the NGF’s Gaucher Advisory Group.

jmillsJanet Mills, Trustee and Patient Advocate, cureCADASIL Association

Janet is often the first point of contact when a new patient is diagnosed with the rare genetic disease CADASIL. She serves on the Board of Trustees of cureCADASIL, and she networks with others in the rare disease community online and at  events. She recently spoke about the genetics behind CADASIL on a Los Angeles radio show. Janet has provided content for two RARE Toolkits, is a guest blogger for the RARE Daily, and has participated in the Global Genes Advocacy Advisors Group.

MichelleFoxMichelle Fox, MS, LCGC, Genetic Counselor Consultant, Invitae

For over 30 years, Michelle coordinated the UCLA Genetics Clinic, providing genetic counseling services to both pediatric and adult populations, including the UCLA Predictive Huntington Disease Testing Program, early onset Alzheimer, and genetic neurodegenerative disorders. Her expertise is both on the provision of clinical services and clinical genetic research in the areas of newborn screening, carrier screening, diagnostic testing, and predictive testing.

A focus of Michelle’s work has been on the ethical issues surrounding the provision of genetic services, shared decision making in offering genetic testing, and best practices in communicating genetic information. Educating the public and providers about genetic testing is the mission of Michelle’s professional career. Michelle is currently providing consultation services to organizations, laboratories, and businesses including Invitae.

Moderator:
Danny_LevineDaniel Levine, Founder & Principal, Levine Media Group

Daniel Levine is an award-winning business journalist who has reported on the life sciences, economic development, and business policy issues throughout his 25-year career. Since 2011, he has served as the lead editor and writer of Burrill Media’s acclaimed annual book on the biotech industry and hosts The Burrill Report’s weekly podcast. His work has appeared in The New York Times, The Industry Standard, TheStreet.com, and other national publications.

Webinar: Psychosocial Aspects of Pituitary Disease

Jessica Diller Martino
Professor – History of Psychology
City University of New York

Register Now!

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: Thursday, March 19, 2015
Time: 10:00 AM – 11:00 AM Pacific Standard Time

Webinar Description:

Please join us on March 19th for a webinar on a topic that is too often ignored: the mental health of pituitary patients. Jessica Diller Kovler, Professor in the History of Psychology at the City University of New York, will join us to discuss psychosocial aspects of pituitary disease.

Learn about the symptoms before and after diagnosis, which symptoms are observed in each type of pituitary dysfunction, and learn ways to cope and connect with others.

Presenter Bio:

Jessica Diller Kovler is a Professor in the History of Psychology at the City University of New York, where she is researching psychosocial aspects of pituitary disease. She is also a medical journalist and former reporter for The New York Times, and has worked collaboratively with the Pituitary Network Association for over a decade.

Webinar: Hypothalamic Pituitary Dysfunction in Young Athletes with Head Injury (THI)

Don’t miss this great opportunity.
Join us tomorrow for a free webinar!

Date: October 23, 2014
Time: 12:00 – 1:00 PM Pacific Daylight Time

Hypothalamic Pituitary Dysfunction in Young Athletes with Head Injury (THI)
Presented by: Saad Sakkal, MD, FACP, FACE, FACPE
Director, Metabolic Care Center, Mason, Ohio

Traumatic brain Injury has been recently of great attraction to researchers, retired football players, and the public. But years before it is documented clinically the Hypothalamic pituitary Dysfunction symptoms appear at much earlier age and need more vigorous attention.

We present in this webinar the early symptoms and recognition of the syndrome from clinical perspective. Describe the Hypothalamic Dysfunction in its widest picture, its relation to Fibromyalgia/Chronic fatigue, and its present therapy available .

If you are unable to attend the live webinar, we will have it available on our website starting Monday. I will post a link when it is available.

http://bit.ly/1qvUcZO

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