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PI Community Is Invited to Participate in Immune Deficiency Foundation’s 2017 Flu, Chickenpox and Shingles Survey

The Immune Deficiency Foundation (IDF) has received a research grant to study the use of seasonal flu, chickenpox and shingles vaccines in the primary immunodeficiency (PI) community. The study will be conducted via a survey that will determine the frequency of chickenpox, shingles and seasonal flu infections among individuals with PI. Data collected will provide information about whether immune globulin therapy may modify the clinical occurrence and severity of signs and symptoms of seasonal flu and shingles for PI patients to help immunologists create guidelines and best practices for these vaccines.... read more

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Shire Launches #PIPostsThanks to Raise
Awareness About PI

Shire, manufacturer of immune globulin for the treatment of primary immunodeficiency (PI), has launched a social campaign, #PIPostsThanks, to spotlight the unsung heroes who make a difference in the lives of people living with PI. The #PIPostsThanks campaign kicked off April 22 through 29 during the seventh World PI Week to bring the PI community together to share personal journeys and highlight the efforts of those who help ease the burden of living with PI.... read more

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2nd Annual Stiff Person Syndrome Symposium
Scheduled for May 21

The 2nd Annual Stiff Person Syndrome (SPS) Symposium will be held Sunday, May 21, from 12 p.m. to 3 p.m. at the Hartford Hospital in Hartford, Conn. Organized by Duarte Machado, MD, who is board certified in neurology with subspecialty training in movement disorders, the event’s theme is “Beyond Suffering.”... read more

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11th Annual Neuropathy Action
Awareness Day Is June 23

The 11th Annual Neuropathy Action Awareness Day will be held Friday, June 23, at the InterContinental Hotel in Los Angeles. This largest neuropathy awareness and education event in the U.S. provides an opportunity for patients to interact with other patients, providers and exhibitors, as well as to learn about neuropathy and how to cope with the disease, policy issues and patient advocacy. The day begins with an exhibit area and educational sessions in the morning, followed by... read more

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MMN Quality-of-Life Patient Survey Is Available

The Neuropathy Action Foundation (NAF) has released the results of its first international multifocal motor neuropathy (MMN) quality-of-life patient survey. Of the 214 patients who completed the survey, 71.15 percent are from the U.S., 6.73 percent are from the United Kingdom and the remainder are from 22 other countries. Key findings from the survey include... read more

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FDA Approves CUVITRU, Shire’s New SCIG 20% to Treat PI

The U.S. Food and Drug Administration (FDA) has approved Shire’s CUVITRU (immune globulin subcutaneous [human] 20% solution) to treat adult and pediatric patients 2 years and older with primary immunodeficiency disease (PI). CUVITRU is the only 20% subcutaneous IG (SCIG) treatment option without proline and with the ability to infuse up to 60 mL (12 grams) per site and 60 mL per hour, per site, as tolerated, resulting in fewer infusion sites and shorter infusion durations compared with other conventional SCIG treatments... read more

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Webinar Series Launched for Young Adults Living with Primary Immunodeficiences

PI Voices is a new young adult webinar series developed by the Immune Deficiency Foundation (IDF) to address the unique needs of young adults living with primary immunodeficiency disease (PI). The series consists of five live webinars covering topics from career management, medical care prioritization, insurance transitions, family planning and health/social life balance. Each offers participants an opportunity to ask questions of panel experts and connect with other audience members who may share their experience of living with PI. The schedule is... read more

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IDF Webinar to Focus on Body Temperature and Fever Response

The Immune Deficiency Foundation is hosting its second PI CONNECT Research Forum Webinar focusing on body temperature and fever response. Guest presenters Philip A. Mackowiak, MD, emeritus professor of medicine, and Jeff Hasday, MD, PhD, professor of pathology, biochemistry and molecular biology at the University of Maryland School of Medicine, will explain these occurrences and provide attendees with valuable knowledge they can use to improve their visits with medical providers... read more

In A Pickle Over PANDAS

New Children’s Book on PANDAS Symptoms and Treatment

A new picture book explaining PANDAS symptoms and treatment written by Melanie Weiss, RN, is sure to be a sweet, compassionate and thoughtful read for both parents and children....
For a sneak peek and to buy the book, visit www.pandas-disorder.com/buy.html

CIS

CIS/USIDNET Launch PI Webinar Series

The Clinical Immunology Society (CIS) and the U.S. Immunodeficiency Network (USIDNET) are introducing a new webinar series for clinicians that will emphasize discussion of interesting immune deficiency cases. Hosted by the CIS PID Summer School faculty and graduates, the inaugural webinar is scheduled for March 31 at 8 p.m. Eastern time, and includes an “Overview of Recent Literature” by Joyce Yu, MD, and Kate Sullivan, MD, “Mystery Infection in XHIGM” by Otavio Marques, MSc, and Juliana Lessa Mazzucchelli, MD, and “What’s Up with Too Many Lymphocytes?” By Kiran Patel, MD.
To register for this webinar, go to
www.anymeeting.com/PIID=EB56D686884638

National Health Information Awards

IG Living Wins National Health Information Award

IG Living has won recognition in the National Health Information Awards competition that honors the nation’s best consumer health programs and materials. The IG Living Aug-Sep issue received the Merit Award in the Patient Education Information class/Magazine category.

To view all the winners, click here. IG Living is listed on page 16. Click on the link to read the IG Living Aug-Sep issue.

IG Living! Magazine Celebrates Eight Years of Advocacy, Education and Inspiration

IG Living! Magazine, the only publication dedicated to patients who are treated with immune globulin (IG) products and their care providers, celebrates its eight year anniversary with the February-March 2014 issue. The recipient of numerous awards, IG Living has long been a definitive source of information and inspiration to those in the IG community. read more