Category Archives: Events

Novo Nordisk

WHO IS NOVO NORDISK?

For 30 years, Novo Nordisk has been a driving force for people living with rare bleeding disorders. We take pride in striving for innovative solutions to help improve patients’ lives. This motivates us to uphold the highest standards in our product research and development. This vital research is just the beginning of our commitment in hemophilia. We’ll continue our research and connect with people with hemophilia and healthcare professionals to ensure we understand and respond to specific needs of the hemophilia community. We’ll continue to develop innovative solutions that can help improve the lives of people with hemophilia in the future.

WEBSITE

Learn more about Novo Nordisk: https://www.changinghemophilia.com/

BROCHURE

CONTACT US

Marquez Washington
Hemophilia Community Liaison
E: MQWT@novonordisk.com
P: 279-321-2757

Sanofi Genzyme

WHO IS SANOFI GENZYME?

At Sanofi Genzyme, treating rare blood disorders isn’t just what we do—it’s who we are. Because rare is in our blood. It’s why we strive to make a difference in the lives of patients, caregivers, and physicians. It’s why we pursue the best possible therapies, services, and resources. Why we research, develop, and discover groundbreaking advancements. Why we use our global scale to create a true, lasting difference. From pipeline to patients, we know that our commitment has the potential to truly transform. To shift the trajectory. To change lives.

WEBSITE

Learn more about Sanofi Genzyme: www.rareblooddisorders.com

BROCHURE

CONTACT US

Albert Maffei
CoRe Manager – Southern California
E: Albert.maffei@sanofi.com
P: 818-966-5780

Pfizer

WHO IS PFIZER?

Pfizer is honored to partner and serve the bleeding disorder community for over 20 years. As you Patient Affairs Liaison, my role is non-sales non-promotional and I am here to answer any questions regarding, resources, education and product information reactively.

WEBSITE

Learn more about Pfizer: http://www.hemophiliavillage.com/

BROCHURE

CONTACT US

Eva Felix
Patient Affairs Liaison
E: eva.felix@pfizer.com
P: 661-632-6735

Infusion Training & Rock Climbing

REGISTRATION CLOSED

Get a Hand – Lend a Hand!
Join us for our Infusion Training Program in partnership with Rady Children’s Hospital HTTC & UC San Diego Health HTTC. This educational initiative is designed to make infusion easier for both patients and their caregivers. In a relaxed setting and with direction from licensed medical professionals, patients can practice the technique of self-infusion and caregivers can learn to administer home infusions for others. Light breakfast and boxed lunch provided. Rock climbing to follow.

Practical Application
All skill levels welcome. Training will consist of what you need to know to self-infuse, determining readiness for self-infusion, safety precautions, and staying organized.

Training will be offered by a team of treatment center nurses on cuffs, practice arms and one-on-one self-infusion. Training to include Sub-Q injections.

Already know how to self-infuse? Come join us to brush up on safety tips and hone your skills.

DATE
February 8, 2020

TIME
10:00am – 1:30pm

LOCATION
Mesa Rim – Mira Mesa
10110 Mesa Rim Road
San Diego, CA 92121

AGENDA
10:00 – 10:30am Registration
10:30 – 11:30am  Program & Infusion Training
11:30 – 12:00pm Closing and Box Lunch
12:00 – 1:30pm  Rock Climbing

REGISTRATION
Registration for this event is now closed as we have reached capacity. Please look out for our next training in the fall.

Virtual Dinner Program

Join us virtually for an evening of education. Our Virtual Educational Dinner Programs are open to all patients with a bleeding disorder and their immediate family members.

Bleeding disorder participants and their immediate family (living in our service area) who register by November 13 and are logged in for the full 1.5-hour program will receive a Grubhub gift card (one per family) from HASDC to purchase dinner on a later date. 

GENE THERAPY REFRESHER (Spanish)
In partnership with BioMarin and Dr. Miguel Escobar. Gene therapy has been explored as a potential treatment approach for well over 50 years. This talk will provide a general overview of the following questions: What causes genetic conditions? What are the different types of gene therapies being researched? What are gene therapy trials trying to figure out?

PROGRAM LANGUAGE
Presented in Spanish. 

IN PARTNERSHIP WITH

DATE | TIME

Tuesday, November 17, 2020 | 5:30PM – 7:00PM

SPEAKERS

Billy Duckworth
Sr. Account Manager – Hemophilia, BioMarin

Dr. Miguel Escobar
Professor of Internal Medicine and Pediatrics, University of Texas Health Science Center

El Dr. Miguel Escobar es Catedrático de Medicina Interna y Pediatría en el Centro de Ciencias de la Salud de la Universidad de Texas y Centro Oncológico M.D. Anderson (University of Texas Health Science Center and M.D. Anderson Cancer Center) y Director Médico del Centro de Hemofilia y Trombofilia de los Estados del Golfo. También es el Director Médico de los Servicios de Anticoagulación y Co-director de la Unidad de Investigación Clínica en la Universidad de Texas. Los intereses de investigación del Dr. Escobar incluyen hemofilia e inhibidores, hemostasia general, trombofilia y trombosis venosa. Ha publicado  numerosos artículos de revistas, capítulos de libros y resúmenes sobre temas hematológicos.

AGENDA

5:20 PM Connect to Zoom link (make sure everything is working)
5:30 PM Welcome & Program Begins
6:30 PM Q&A
7:00 PM Program Concludes

REGISTRATION

Registration for this program is now closed.

FREQUENTLY ASKED QUESTIONS

How do I join the webinar?
After you have registered via the HASDC website, a join webinar link will be emailed to you from HASDC. Please use the “Click Here to Join” link in that email.

How do I access video from my smart phone or tablet?
Download the free Zoom App available for apple, google and android. If you have already downloaded Zoom, please make sure to download the most recent upgrade.

Is this a video conference? Can people see me?
No, your video camera will be turned off upon entry into the webinar. All participants will be placed on mute.

How do I submit questions during the program?
Please use Zoom’s chat feature to submit questions during the program. We will make sure to answer them during the Q&A. We ask that you only use this feature to submit questions and limit conversation.

I don’t have a strong enough internet connection at home or a device: There is a call-in option for the conference. Please let us know ahead of time if this is an issue for you and we will send you the presentation images and the call-in number.

What if I get disconnected or can’t login?
We will be actively troubleshooting throughout the web-conference. Text 619-325-9401 if you have any technical difficulties and we will try to help you get back into the web-conference. We encourage everyone to start logging in at 5:20 pm so that we have time to help you troubleshoot and you will still be eligible for the dinner.

Who is eligible for a gift card?
Bleeding disorder participants and their immediate family (living in our service area*) who register and are logged in for the full 1.5-hour program are eligible for a GrubHub gift card* to purchase dinner on a later date. *One gift card provided per family. *Our service area is San Diego and Imperial Counties. If there is availability, those living outside our service area may qualify; distributed in order based on registration date/time. 

How will I receive my dinner gift card?
If pre-registered and you are logged in and actively participating during the full 1.5-hour for the web-conference (5:30 PM – 7:00 PM), you will be emailed a e-gift card from GrubHub to be used to purchase dinner on a later date (please note: gift cards will be sent to the email you used to register).

Virtual Dinner Program

Join us virtually for an evening of education. Our Virtual Educational Dinner Programs are open to all patients with a bleeding disorder and their immediate family members.

**Bleeding disorder participants and their immediate family, living in our service area, will receive a $50 Grubhub gift card from HASDC to purchase a meal on a later date. 

DATE | TIME

Tuesday, December 1, 2020 | 5:30PM – 7:00PM

PROGRAM LANGUAGE

Presented in Spanish | Presentado en español

TOPIC

Pruéblo: Un tratamiento diferente para la hemofilia A
HEMLIBRA es un medicamento recetado que se utiliza como profilaxis de rutina para prevenir o reducir la frecuencia de hemorragias en adultos y niños, desde el nacimiento en adelante, con hemofilia A con o sin inhibidores del factor VIII.

Give it a Shot: A Different Type of Treatment for Hemophilia A
HEMLIBRA is a prescription medicine used for routine prophylaxis to prevent or reduce the frequency of bleeding episodes in adults and children, ages newborn and older, with Hemophilia A with or without factor VIII inhibitors. Join us as we learn more about HEMLIBRA.  

SPEAKERS

Angélica Flores, MSN, RN, PHN
Educador clínico de la comunidad que padece hemofilia, Genentech

Maria S.
Paciente embajadora

AGENDA

5:20 PM Connect to Zoom link (make sure everything is working)
5:30 PM Welcome & Program Begins
6:30 PM Q&A
7:00 PM Program Concludes

REGISTRATION

Registration for this program is now closed.

GRUBHUB GIFT CARDS

**Bleeding disorder participants and their immediate family, living in our service area, who register and are logged in for the full 1.5-hour program are eligible for a Grubhub gift card to purchase a meal on a later date. One gift card provided per family.

Our service area is San Diego and Imperial Counties. If there is availability, those living outside our service area may qualify; distributed in order based on registration date/time. 

SPONSOR

Thank you to our sponsor for partnering with us to make this educational program possible.

FREQUENTLY ASKED QUESTIONS

How do I join the webinar?
After you have registered via the HASDC website, a join webinar link will be emailed to you from HASDC. Please use the “Click Here to Join” link in that email.

What if I get disconnected or can’t login?
We will be actively troubleshooting throughout the web-conference. Text 619-325-9401 if you have any technical difficulties and we will try to help you get back into the web-conference. We encourage everyone to start logging in at 5:20 pm so that we have time to help you troubleshoot and you will still be eligible for the dinner.

How will I receive my dinner gift card?
HASDC will email you an e-gift card from GrubHub to be used to purchase a meal on a later date. Please note: gift cards will be sent to the email you used to register.

Factor & Frost

Join us virtually for our annual Factor & Frost program. We look forward to seeing all of you as we celebrate the season. 

Get festive with us and wear your favorite holiday sweater! 

DATE | TIME

Saturday, December 12, 2020 | 11:00am – 12:00pm

FACTOR & FROST BOXES

Participants who attend our entire virtual program (must be logged on by 11am) will be mailed a Factor & Frost box with the following items:

  • Cookie Decorating Kit to do at home with your family
  • Holiday crafts
  • A gift card will be given to children 17-years old and under who are pre-registered, immediate family members and have a bleeding disorder, are a carrier or a sibling. Additional relatives must register separately.
  • Program sponsor educational materials. 

Please note: Factor & Frost boxes and drawing items will be provided to individuals and families who are currently in our database and live in our service area. Our service area is San Diego and Imperial Counties. If there is availability, those living outside our service area may qualify; distributed in order based on registration date/time. Boxes will be shipped to the address provided at registration. At this time, we are unable to provide replacement items if box is lost.

VIRTUAL BOOTH SCAVENGER HUNT

Learn more about our exhibitors! Click below to view our Virtual Booth Scavenger Hunt questions. You can click through each sponsor’s virtual booth page, under the Factor & Frost tab (to the left), to find the answers. Answer the questions correctly and you will be entered into a drawing for one of the following items: $100 Walmart gift card, HP Chromebook or custom HASDC Vans (women’s size 7/5.5 boys). One entry per email. Must be present on 12.12.20 live program to win!  

REGISTRATION

Registration for this program is now closed.

THANK YOU TO OUR SPONSORS

Advocacy Forum

Learn to better advocate for yourself personally, professionally and politically. Join us for our annual Advocacy Forum. Attendees will have the opportunity to learn about what advocacy is, the importance of being a self-advocate, and how to politically advocate at the local, state and national levels. This event is open to all members of the bleeding disorders community, their immediate family members and caregivers.

Program Language
Presented in English with live Spanish translation available. 

DATE

Saturday, February 27, 2021 | 10:00AM – 2:00PM

POST-CONFERENCE BOXES

**Pre-registered families attending for the entire day (must be logged on by 10:00am) will receive a post-conference box filled with product literature and giveaways including a $50 Target Gift Card. One box per mailing address.

 **Giveaways, boxes and gift cards are only for HASDC members and their immediate family only.  (An HASDC member is defined as someone who is currently on our mailing list and who resides in or receives treatment in San Diego or Imperial County).

VIRTUAL BOOTH SCAVENGER HUNT

Learn more about our exhibitors! Click below to view our Virtual Booth Scavenger Hunt questions. You can click through each sponsor’s virtual booth page, under the Advocacy Forum tab (to the left), to find the answers. Answer the questions correctly and you will be entered into a drawing for a $50 Amazon gift card. One entry per email.

Must be present on 2.27.21 live program to win!  

AGENDA

Welcome & Ice Breaker

Sponsor Breakouts
Have a chance to meet with representatives from Bayer, Genentech & Novo Nordisk.

Empowered: Tools for Self-Advocacy
Eva Felix will inform you on how to recognize and discuss the unique challenges of hemophilia. She will provide practical tips and resources to individuals with hemophilia to help them become self-advocates in many areas of life.

Born from Advocacy – A California Story
Lynne Kinst, Executive Director for the Hemophilia Council of California, will review the Hemophilia Council of California’s advocacy strategy, key issues in 2021, as well as how to get involved in protecting your access to care in California.

Sponsor Breakouts
Have a chance to meet with representatives from Pfizer and Takeda.

Put Yourself Out There: Sharing and Advocating for Bleeding Disorders
Everyone has a story to tell. It is important that real people share their experiences to help advocate for those within the bleeding disorder community and themselves. Gain confidence, improve your communications skills, and make connections.

COVID Vaccines & Bleeding Disorders
Leonard A. Valentino, MD, President & CEO of the National Hemophilia Foundation, will be sharing COVID-19 updates and what those with bleeding disorders should know when thinking about getting vaccinated.

REGISTRATION

SPONSORS