Presentation by Dr. Alex Straumann: June 22nd

The Washington DC Area Eosinophilic Connection (WAEC) has been invited to attend a presentation by Dr. Alex Straumann, a leading researcher in the field of Eosinophilic Disorders. This is a wonderful opportunity to hear one of the top researchers in the field. If you are interested in attending, please see the event & RSVP details below. Please note this presentation focuses solely on Eosinophilic Disorders.

WHO: Dr. Alex Straumann, internationally renowned researcher
More information about Dr. Straumann can be found at the following link: http://www.ibdnet.ch/dt/about/members/straumann.html

WHEN: Wednesday, June 22, 2011 from 8:30-10:00am. A light breakfast will be offered.

WHERE: City of Fairfax Regional Library, located at 10360 North Street, Fairfax, VA 22030

O & O Alpan, LLC is sponsoring this event. To RSVP, please email: NationalEoESummit@…

Any questions may be directed to NationalEoESummit@…

National Eosinophil Awareness Week

National Eosinophil Awareness Week (NEAW) is next week, May 15th through 21st!

What can YOU do to help spread awareness about Eosinophilic Disorders?

Show your support for the NEAW theme of EDUCATE
Educate
Donate
Unite
Change
Awareness
Thank
Engage

Promote NEAW as a community by placing the awareness logo on websites and social media. Encourage others to also become engaged.

NIH Clinical Center looking for adults ages 18-65 with an EGID

Doctors at the National Institute of Allergy and Infectious Diseases are conducting a study to improve understanding of how immune system responds to food allergens and how immune cells contribute to disease in individuals with food allergies and eosinophil-associated gastrointestinal disorders (EGIDs). The study is open to individuals 18 to 65 years old with EGID. There’s no cost for study-related procedures and compensation may be provided.

The NIH Clinical Research Center is located in Bethesda Maryland, and is the government’s premier research hospital. Clinical research is conducted to find new and improved ways to prevent, diagnose and treat disease. Approximately 1,000 studies are conducted at the Clinical Center on common and rare diseases. Every research patient and healthy volunteer admitted to the Clinical Center participates in a research study.

Your help will make a difference in our ability to improve the lives of people with this disease, as well as lives of future generations.
To participate, call 1-800-411-1222 (TTY#:1-866-411-1010). Se habla español. For more information on the study, visit clinicaltrials.gov and refer to study 10-I-0196. NIH is part of the Department of Health and Human Services.

Healthcare cannot advance without clinical research, and your assistance is very much needed if we are to inform the public about opportunities to participate in our studies.

NORD Medical Foods Conference

On February 10th, 2011 NORD (National Organization for Rare Disorders) will be hosting a conference in Washington, DC to focus attention on the struggles of everyday families trying to provide medical food and specialized formulas to children and adults with varying diseases. Because these foods are not considered medicines, insurers don’t always reimburse for them. NORD plans to bring together the experts to focus in on this issue. For more information please visit NORD’s site: www.rarediseases.org

Encourage your Representative to join the Rare Disease Caucus

U.S. Representatives Joseph Crowley (D-NY) and Fred Upton (R-MI) have formally announced the newly-established Rare and Neglected Diseases Caucus. As co-chairs of this caucus, their goals are to bring Congressional attention to the 6,800 known rare diseases that currently have no approved therapies, ensure sufficient funding for research and orphan product development, explore ways to incentivize companies to create new drugs, biologics and humanitarian use devices, and provide an opportunity for Members of Congress, families, and advocacy groups to exchange ideas and policy concerns. Both Crowley and Upton are looking to you to encourage your Representative to become a member of this important Caucus.

Call the U.S. Capitol Switchboard at (202) 224-3121 today and ask to be connected to your Representative’s office. If you’re not sure who your Representative is, go to http://www.house.gov/ and enter your zip code to find out the name. Please encourage your Representative to become a member of this important Caucus AND let them know very briefly how Eosinophil Associated Diseases have affected your life.

Please email pac@apfed.org for suggestions on how to contact your representative, a sample letter, or to let them know that you have contacted your representative.  Thank you in advance for your hard work!

New EGID Registry!

There is now a Registry for Eosinophilic Gastrointestinal Disorders (REGID) at http://regid.org/

Patients with and caregivers of children with EGIDs can soon register; however, the login and registration is still under construction.

From the Registry website:

The Registry for Eosinophilic GastroIntestinal Disorders (REGID) is a collaboration of medical centers, professionals, families, and individuals whose mission is to improve the knowledge, research, and outcomes for people living with eosinophilic gastrointestinal disorders. REGID is not only a national registry of people affected by eosinophilic gastrointestinal disorders but also a forum to enhance the connection of people to resources and research.

We’ll try to post again when the Registry is up and running.