The Northern California Comprehensive Thalassemia Center

12/18/2021

Thank you Marcela Weyhmiller for 10 years of service to the thalassemia program

10/15/2021

Dr. Ash Lal will be presenting Virtual Grand Rounds for the CDC on Oct 29, 2-3 pm ET. "The Non-Transfusion-Dependent Thalassemias: An Enduring Challenge"

Thalassemia is an inherited (i.e., passed from parents to children through genes) blood disorder caused when the body doesn’t make enough of a protein called hemoglobin.

04/11/2021

This short film by the UCSF Fetal Treatment Center follows the journey of five families with Alpha Thalassemia Major. Watch the full version on YouTube: https://www.youtube.com/watch?v=Z69lSa6bJYg

04/08/2021

Thalassemia summer camps:

CAF periodically shares information about camps for children with serious medical conditions including thalassemia. This is provided for informational purposes so that parents/patients can know about possible options they may wish to consider. CAF does not endorse one camp over another. We recommend...

03/20/2021

Infographic by TIF

01/23/2021

Editorial by Dr. Mark Walters

Editorial from The New England Journal of Medicine — Induction of Fetal Hemoglobin by Gene Therapy

01/12/2021

Dr. Z and Dr. C get some one on one time with the legendary sickle cell physician, Dr. Elliot Vichinsky. We talk about who Dr. Vichinsky is and how he became a legend, transforming the field forever.

08/19/2020

Our latest thalassemia newsletter is posted here:

06/02/2020

05/29/2020

After the remarkable success of the first ethalED for Healthcare Professionals, the second one is already underway!

We are very excited to announce today that Prof. John Porter, Professor of Haematology & Consultant Haematologist at the University College London Hospitals in London, United Kingdom will be the host of the ''Access to New Therapies'' on Friday, 5 June 2020, 15:00 CET.

Prof. Porter will be sharing with participants his insights on novel treatment approaches, such as , for with β- .

You can register through the following link:
https://forms.gle/tdCH8SZiEdkxBMJQ8

05/05/2020

“When I first started dating, I would tell the person, ‘Oh, I just have to go to the hospital to take care of some things, but don’t worry about it. I just have a blood condition that requires that I’m in the hospital all day on Fridays.’ That’s it, no further details needed.

As I got older, and relationships lasted longer, I would divulge more information. A lot of them would be supportive and come with me to doctor’s appointments. Usually their first thought was: everything seems very normal until it isn’t – until you see a mediport, or you see a bag of blood hanging. And suddenly the person you know as really outgoing and goofy and funny is a patient who has a mediport, who is at the mercy of having to sit for 4-6 hours receiving blood.

Usually, I remind them that I am still the outgoing and funny person that they know, and this is just one aspect of my life. It’s not all blood transfusions and medication, there’s a lot of things in between.”

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Jesse is also a patient advocate and runner who raises awareness for rare blood disorders by participating in long-distance races. Read more about his story and work here: https://rareundiagnosed.org/running-for-run-taking-awareness-to-the-next-level-jesse-marimat/

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During the COVID-19 pandemic, our blood supply has decreased dramatically. Blood donations are crucial so that people with thalassemia and other blood disorders can not only survive, but thrive. Make an appointment to donate blood at your local Bay Area donation center today:
Call 1-877-258-4825 or visit bloodheroes.com

04/27/2020

Mom: “G was so little and such a hard poke that it took multiple tries to do his IV. And we were like, ‘Is this going to happen every single time? Is this his future?’”

Dad: “I think the turning point with the IV pricks was when it turned into, like, ‘Why don’t we get him involved?’ He just wanted to be involved in it. Like he would clean up the Emla, and he would hold the rubber thing for his arm. He became part of the process.”

Mom: “We have to thank Debbie, she’s the retired nurse from the hospital.

Dad: “And Diane, too!”

Mom: “Diane, too! That was the start of him turning around with the IVs. They were like, ‘You know what, let him watch. Don’t turn his head away.’ It stopped being scary.”

G: “I LIKE transfusions! There’s a game there! I want to play all the time.”

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During the COVID-19 pandemic, our blood supply has decreased dramatically. Blood donations are crucial so that people with thalassemia and other blood disorders can not only survive, but thrive. Make an appointment to donate blood at your local Bay Area donation center today:
Call 1-877-258-4825 or visit bloodheroes.com