Oct 19, 2015

Responsible Testing Study seeks participants

Recombine Research: Participate in the Responsible Testing Study

Recombine is a healthcare company focused on developing genetic tests that empower individuals and families. Genetic tests can only help families understand their risk for disease if the tests are able to accurately and dependably detect disease. The IRB-approved Responsible Testing study seeks to enroll individuals with known mutations (or changes in DNA) to verify that our genetic tests correctly identify the mutation. Participants receive a $20 Visa gift card.

To participate in the Responsible Testing study, we ask for your permission to use:
  • a saliva sample
  • your existing genetic test report
You are eligible to participate if:
  • You have a confirmed clinical diagnosis with a causative genetic variation, or you are a confirmed carrier of a mutation, that we would like to validate on our tests.
  • You are a member of a participating disease advocacy group or a patient at a participating clinic.
  • You are at least 18 years old.
  • You do not have a personal history of cancer, chemotherapy, or bone marrow transfer.
You can sign up today at recombine.com/responsible-testing.

For more information, go to www.recombine.com, or contact the research team at research@recombine.com

Oct 7, 2015

New: UCSF Center for Maternal-Fetal Precision Medicine

We are collaborating with The Center for Maternal-Fetal Precision Medicine, a trans-disciplinary program designed to improve our understanding and treatment of patients with congenital anomalies and pregnancy complications. We aim to integrate resources and talent between scientists and clinicians to accelerate research and clinical trials of fetal and neonatal interventions, create stronger bridges between basic research and clinical applications, and improve maternal, fetal, and neonatal care.

Visit their web site: 

Jul 1, 2015

Thalassemia Nutrition Survey

A survey is being conducted by investigators at the UCSF Benioff Children’s Hospital Oakland.  Over the past 10 years it has become clear that patients with Thalassemia often have nutritional deficiencies. These deficiencies may be related to an unbalanced food intake. Unfortunately, accurate information on nutrition is rarely a topic of discussion during medical visits due to so many other issues that the patients want to discuss.

In order to better serve you (our patients), we have developed a survey to gather information on your beliefs about nutrition, where you get your nutritional information from, and who influences your decision making. The information gathered will be anonymous, therefore please answer truthfully. Your answers will not influence the medical care you receive in any way. This survey is intended for adults only (>18 or older). If you are a younger patient who would like to participate in the survey, please talk to your parent.

For those of you who complete the survey and are willing to share your email address with us, you will be automatically entered into a drawing for one of three $100 Amazon Gift Cards.
The Survey will be closed on Monday, July 20th, so please respond before that date!

Thank you for your participation!

Nutritional Attitudes and Beliefs held by Patients with Thalassemia Survey:


Kind Regards,

Ellen Fung, PhD RD
Associate Research Scientist
UCSF Benioff Children’s Hospital Oakland

Ms. Rammeet Kaur
Thalassemia Patient
CHORI Summer Research Student Intern
Doris Duke Research Intern Fellow 1

Apr 17, 2015

BAT Run 5K for thalassemia: Berkeley, Oct 31st

Thalassemia Patient and Family Conference: Seattle, May 9th

You Are Cordially Invited

Thalassemia Patient and Family Conference

When: Saturday, May 9, 2015, 9:00am – 3:00 pm
Where: Pan Pacific Hotel Seattle
2125 Terry Avenue, Seattle, WA 98121

Hosted By:

Topics Covered:
  • Historical Perspective on Thalassemia and Chelation: Dr. Vasili Berdoukas, Children’s Hospital Los Angeles
  • Iron Physiology and Alloimmunization with Transfusion: Dr. Sioban Keel, Seattle Cancer Care Alliance
  • Gene Therapy Trials: Alexandria Petrusich, Blue Bird BioTech
  • Children’s Program will be offered for children ages 3 and older.

Please RSVP by May 1, 2015:
Laurice Levine, MA, CCLS
510-428-3885, ext. 5427
We hope you can join us!

Hosted by:
Thalassemia Outreach

UCSF Benioff Children's Hospital Oakland

Sponsored by:
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