Comprehensive Health Education Services

08/19/2020

Today's announcement regarding BioMarin's gene therapy product.

BioMarin Pharmaceutical Inc. (NASDAQ: BMRN) today announced that the U.S. Food and Drug Administration (FDA) issued a Complete Response Letter (CRL) to the Company's Biologics License Application...

07/08/2020

Are you a woman with a bleeding disorder? Read our feature article by Dr. Robert Sidonio on how access to care for women is changing. Are you managing chronic pain? Read part one of our 3 part-series by Angela Lambing on Alternative and Complimentary management of symptoms. Check out this issue for more on managing feelings of marginalization, rare bleeding disorder resources, joint health and more!!

For centuries, women with bleeding disorders (WWBD's) have been ignored, belittled, ostracized - even convinced that their symptoms are conjured up by some psychological barrier. But this last decade has marked a pivotal point in our history. Dr. Robert Sidonio of Emory, unarguably one of WWBD's mos...

03/16/2020

Sharing NHF CEO Len Valentino's statement regarding COVID-19 and the bleeding disorders community. Please refer to his recommendations for those affected by an inhibitor. We urge everyone to practice social distancing and proper hand washing during this challenging time.

A statement from Dr. Valentino addressing the concerns of the community regarding the rapidly evolving COVID-19 situation.

12/18/2019

In our programs and LifeLines for Health publication, we have historically placed a lot of focus on the psychosocial aspect of living with a chronic health conditions. As we all know, being differently abled comes with many frustrations. After reading this article, I just had to share. As a special educator, teaching children to label their feelings was a large part of behavior management. I love how the layers of this wheel provide more words beyond the BIG emotions. What a fabulous tool to print and put on your refrigerator, and not just for the children or teens in your life. I'm putting it on mine too! For those times when someone asks me "What's Wrong", and I say "Nothing", because I can't articulate the words

"I hope it's a tool that can help you too."

11/13/2019

Great article!

If your child is acting out or having tantrums, he may seem angry or manipulative, but he may be extremely anxious and not know any other way to express his feelings.

09/12/2019

Not sure if anyone has been following this story, but it is truly concerning. As always, educate yourself from multiple resources and look out for yourself and your loved ones.

Clinicians who treated lung disease patients say va**ng THC oil was frequently reported

08/30/2019

The new blood-based screening tool represents an alternative to a standard clot-based FVIII test which cannot accurately determine inhibitor levels in patients receiving Hemlibra®.

05/06/2019

Finally some good news about Accumulator Adjusters! Thank you so many who have advocated for changes to this punitive practice.

This month’s Washington Wire shares some good news about access to care! Read about recent actions taken by lawmakers and other news from Washington: http://bit.ly/WW042019

05/06/2019

Such a great opportunity to determine what effect hemophilia has on children's neurocognitive development!

Assessment of neurocognitive outcomes in children with haemophilia - the eTHINK trial.

04/18/2019

Great spot on The Doctors with Alex Borstein. Had the privilege of meeting her several years ago at NHF!

Actress, writer and comedian Alex Borstein opens up about how the blood disorder hemophilia has impacted her family and how it even inspired her career!

04/11/2019

Great information for the most common bleeding disorder.

How do you know you have von Willebrand Disease? You might experience one or more of these symptoms. Keep in mind that your normal is not necessarily normal!
http://ow.ly/6nUk50pEujR

02/19/2019

Hope to see you at HFA sporting one of these shirts!!

Happy Valentine's Day! There is so much LOVE in the bleeding disorders community and you want to show it, so back by popular demand is our "I ❤️ Someone with a Bleeding Disorder" shirt! All proceeds from the sales supports our emergency assistance program, Helping Hands, which provides critical funds to families experiencing financial hardship. This is an exclusive, limited time offer, so order today at www.customink.com/fundraising/hfasupport! Shirts start at $25, in recognition of HFA's 25th anniversary!
This offer is only available for two weeks and the shirts will be shipped just in time for Symposium.

01/28/2019

Are you a New Englander? Then you CANNOT miss this event! Dr. Steve Pipe-Chair of MASAC will be our guest speaker for the NEHA Consumer Medical Symposium March 9th in beautiful Portsmouth, ME. The event is free for NEHA members, $10.00 for nonmembers. Traveling more than 100 miles to get there? Check out NEHA's $100 for 100 assistance program. It has been an honor serving on the committee for this program since it's inception, 3 years. Hope to see you there!

At our past Consumer Medical Symposium, 8 out of 10 attendees reported that the program provided them with the tools to have informed conversations with their providers about clinical trials.

Join the conversation on Saturday, March 9th at The Westin Portland Harborview Hotel for this year's event! There will be an adult, teen, and youth track. Childcare will also be provided for newborn to age 5. Register today: http://bit.ly/2QvHca0

01/15/2019

More choices in extended half-life products

A single dose of BIVV001 significantly increased levels of factor VIII for a week in the blood of people with severe hemophilia A, a study found.

01/14/2019

More exciting news!

A single dose of BIVV001 significantly increased levels of factor VIII for a week in the blood of people with severe hemophilia A, a study found.

11/26/2018

11/07/2018

Looking forward to our Moms, Uninhibited Meeting this weekend to provide some richly deserved down time for moms.

"This is for the parents out there who feel wrecked."

09/19/2018

Specialty clinics aim to improve reproductive—and overall—health for women with bleeding disorders.