REGISTRATION FORM
Thank you for your interest in participating in our Food for Though program on October 30, 2023 at Seasons 52 (UTC Mall). Capacity is limited, therefore only register if you are certain you can attend this program.
REGISTRATION FORM
Thank you for your interest in participating in our Food for Though program on October 30, 2023 at Seasons 52 (UTC Mall). Capacity is limited, therefore only register if you are certain you can attend this program.
WHO IS BIOMARIN?
BioMarin is a world leader in developing and commercializing innovative therapies for rare diseases driven by genetic causes. Visit www.biomarin.com to learn more.
WEBSITE
Learn more about Gene Therapy: https://www.hemdifferently.com
BROCHURE
CONTACT US
Billy Duckworth
Hemophilia Sr. Account Manager
E: Billy.Duckworth@bmrn.com
P: 949-537-1063
Join us for Food for Thought: an HASDC Educational Dinner. Our Educational Dinner Programs are open to all individuals with a bleeding disorder and their immediate family members living in HASDC’s service area.
DATE | TIME (Fecha | Hora)
Friday, January 24, 2025 | 6:00PM – 8:00PM
Location: Phil’s BBQ (Sports Arena)
Phil’s BBQ (Sports Arena)
3750 Sports Arena Blvd.
San Diego, CA 92110
PARKING
Public parking in lot outside of restaurant.
PROGRAM LANGUAGE (Idioma del programa)
Presented in English | Presentado en ingles
TOPIC (Tema)
“Women with Hemophilia: New Emphasis and About Time!”
This presentation reviews the history of women and hemophilia and how culture has shaped their experiences. Along with history, genetics and research are also presented specific to women. Finally, a review of treatment paradigm changes needed to fully meet the needs of a women today.
SPEAKERS (Presentadore)
Amber Federizo
Octapharma
AGENDA (Agenda)
6:00 PM Arrive at Phil’s BBQ (please arrive on time)
6:15 PM Welcome & Program Begins
8:00 PM Program Concludes
REGISTRATION (Inscripción)
Registration for this program is now closed.
Please note: if you are not currently in our database, you will receive an email to complete our Member Database form before your registration can be confirmed.
WAITLIST POLICY
If you are registering and live outside of HASDC’s service area, you will be placed on a waitlist. If space is available, we will reach out to you via email to confirm registration for this event.
SPONSOR (Patrocinador)
Thank you to our sponsor for partnering with us to make this educational program possible.
Join us for Food for Thought: an HASDC Educational Dinner. Our Educational Dinner Programs are open to all individuals with a bleeding disorder and their immediate family members living in HASDC’s service area.
DATE | TIME (Fecha | Hora)
Monday, March 3, 2025 | 6:00PM – 8:00PM
Location: Seasons 52
Seasons 52
Napa Room
4505 La Jolla Village Drive
San Diego, CA 92122
PARKING
Public parking in lot outside of restaurant. Make sure to get parking ticket validated inside restaurant.
PROGRAM LANGUAGE (Idioma del programa)
Presented in English | Presentado en ingles
TOPIC (Tema)
“Transforming Lives: Discover the Power of Gene Therapy for Hemophilia B”
Lived Experience Perspectives from Patients and Providers
This educational program offers you and your family members the opportunity to learn how HEMGENIX works, the process for treatment and how CSL Behring can best support your treatment decisions.
SPEAKERS (Presentadore)
Doris Quon, MD, PhD
Orthopedic Institute for Children Los Angeles
AGENDA (Agenda)
5:45 PM Arrive at Seasons 52/Check-In
6:00 PM Program Begins
8:00 PM Program Concludes
REGISTRATION (Inscripción)
Registration for this program is now closed.
Priority registration will be given to those with Hemophilia B.
Please note: if you are not currently in our database, you will receive an email to complete our Member Database form before your registration can be confirmed.
WAITLIST POLICY
If you are registering and live outside of HASDC’s service area, you will be placed on a waitlist. If space is available, we will reach out to you via email to confirm registration for this event.
SPONSOR (Patrocinador)
Thank you to our sponsor for partnering with us to make this educational program possible.
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, empowerment, how to politically advocate at the local, state and national levels and current state of health insurance in California.
This year’s event will include a session on Infusion Training provided by our local Hemophilia Treatment Centers!
*Our programs and events are open to individuals with a bleeding disorder, carriers, immediate family members/caregivers living in HASDC’s service area.
DATE | TIME (Fecha | Hora)
Saturday, February 17, 2024 | 9:00AM – 2:00PM
Location: San Diego Zoo Safari Park
Venue: Kijamii Overlook (CLICK HERE FOR MAP)
San Diego Zoo Safari Park
15500 San Pasqual Valley Rd.
Escondido, CA 92027
Parking: Complimentary parking for ONE car per registered family.
Weather: Sunny/63 (please plan attire accordingly; venue is covered but has open walls)
CHILDCARE (cuidado de ni´ños)
Complimentary childcare will be provided for children ages 3-12 only. Children will participate in a tram tour. Young adults 13 and older are expected to participate in the educational program. Children under 3 are welcome to stay with their parents or please make alternate arrangements.
Please inform HASDC in advance if your child has any special needs (behavioral, educational, dietary, etc.) and we will do our best to make accommodations.
AGENDA
REGISTRATION (Inscripción)
Registration for this event is now closed.
We are unable to take late registration requests.
*WAITLIST
Please note: if you are registering and live outside of HASDC’s service area, you will be placed on a waitlist. If space is available, we will reach out to you via email to confirm registration for this event.
Please note: if you are not currently in our database, you will receive an email to complete our Member Database form before your registration can be confirmed.
SPONSORS (Patrocinadores)
Thank you to our sponsors for making this program possible.
ABOUT WASHINGTON DAYS
The National Bleeding Disorders Foundation’s Washington Days is an opportunity for people affected by inherited blood disorders to advocate for issues that are important to them. We look forward to meeting with legislators and staff in person with hundreds of volunteer advocates across the United States to discuss issues important to our community.
THIS IS NOT AN HASDC PROGRAM; ALL EXPENSES MUST BE PAID ON YOUR OWN.
DATES
March 5-7, 2025 | Washington D.C.
VENUE
Hyatt Regency Washington on Capitol Hill
400 New Jersey Avenue, NW
Washington, D.C. 20001
REGISTRATION
Please click here to visit NBDF’s website and review more information on how to register.
ABOUT FUTURE LEADERS
The Hemophilia Council of California’s (HCC’s) Future LeadersProgram provides leadership training and develops advocacy skills for teens affected by bleeding disorders. Leading up to Legislative Day, they find out more about their role in the government process. Future Leaders also learn to be effective advocates for themselves and their families.
Future Leaders will attend a pre-Legislative Day program in person. There they will find out how to tell their stories to legislators. They also learn to advocate for themselves and their families in other areas of their lives. Future Leaders take part in leadership building games and activities. Other fun highlights include a visit to the Capitol and team building games! Most importantly, teens learn about the legislative process and how it affects them.
During Legislative Day, Future Leaders take a lead role in legislative meetings! They tell their stories and advocate for important legislation at the State level.
THIS IS NOT AN HASDC PROGRAM; ALL EXPENSES PAID BY THE HEMOPHILIA COUNCIL OF CALIFORNIA.
WHO CAN APPLY?
DATES
March 12, 2025 | Virtual Legislative Day Orientation (via Zoom)
March 15-18, 2025 | Future Leaders Program
March 17, 2025 | Legislative Day (Future Leaders participate)
REGISTRATION
Registration Deadline: Monday, February 10, 2025
QUESTIONS
For more information or help applying, please email the Hemophilia Council of California at apalladino@hemophiliaca.org.
ABOUT LEGISLATIVE DAY
Protecting patient access to affordable care continues to be a crucial as we move into 2025, and we need your help! Join us on March 17th, 2025 for the Hemophilia Council of California’s Annual Legislative Day.
In 2025 we need to stay strong in our commitment to keeping health care accessible for the bleeding disorders community! Patient copay assistance is still at risk; State agencies in charge of health care affordability may not include the patient voice in their regulations or balance affordability with a commitment to the quality and availability of care. We need YOUR voice. Will you join us?
THIS IS NOT AN HASDC PROGRAM; ALL EXPENSES MUST BE PAID ON YOUR OWN.
DATES
March 12, 2025 | Virtual Legislative Day Webinar Orientation (via Zoom)
March 17, 2025 | Legislative Day (in Sacramento)
REGISTRATION
Registration Deadline: Monday, February 10, 2025
TRAVEL TO SACRAMENTO
Please note: you are responsible for booking your own travel to and from Sacramento. Breakfast and lunch will be provided by the Hemophilia Council of California.
QUESTIONS
For more information or help applying, please email the Hemophilia Council of California at apalladino@hemophiliaca.org.
REGISTER TODAY
The Hemophilia Federation of America (HFA) will be holding their annual Symposium March 27-30, 2025 here in San Diego!
THIS IS NOT AN HASDC PROGRAM; ALL EXPENSES MUST BE PAID ON YOUR OWN, NO SCHOLARSHIPS AVAILABLE THROUGH HASDC.
DATES | LOCATION
March 27-30, 2025 | The Sheraton San Diego Hotel & Marina
The Sheraton San Diego Hotel & Marina
1380 Harbor Island Drive
San Diego, CA 92101
SYMPOSIUM AGENDA
CLICK HERE to view HFA Symposium’s agenda.
REGISTRATION
Registration is now open. Please note: childcare registration closes March 14, 2025.
If you need financial assistance to attend the HFA Symposium, you can refer to the Hemophilia Federation of America’s Scholarship page.
Join us for a special afternoon tea just for women and girls living with bleeding disorders. Enjoy a relaxing afternoon of delicious treats, heartfelt conversations, and shared experiences in a supportive and welcoming space.
Dress on Theme: Feel free to wear something floral, pastel, or tea-party chic to match the cozy, elegant vibe of the afternoon!
Let’s connect, uplift, and empower each other—you are not alone, and your story matters. Our Educational Programs are open to all individuals with a bleeding disorder and their immediate family members living in HASDC’s service area.
Program Audience
This event is intended exclusively for women, girls, and individuals who have the capacity to menstruate. It serves as a respectful and affirming space to honor shared experiences, foster connection, and support collective empowerment.
DATE | TIME (Fecha | Hora)
Saturday, May 10, 2025 | 11:00AM – 2:00PM
Location: Westgate Hotel San Diego
Westgate Hotel San Diego
1055 Second Ave.
San Diego, CA 92101
PARKING
Pay on own: special Afternoon Tea valet parking price of $10 for three hours in hotel’s secure garage. Standard parking prices thereafter of $12 per hour.
PROGRAM LANGUAGE (Idioma del programa)
Presented in English | Presentado en ingles
TOPIC (Tema)
“Women’s Empowerment”
We will explore women’s awareness and advocacy, how bleeding disorders uniquely impact women’s health, and ways in which women function as caregivers for loved ones with bleeding disorders.
SPEAKERS (Presentadore)
Annabelle Garcia, MPH
Community Education Specialist, Takeda
AGENDA (Agenda)
11:00 AM Arrive at venue
11:30 AM Program Begins
2:00 PM Program Concludes
REGISTRATION (Inscripción)
Registration for this program will close May 8, 2025.
Please note: if you are not currently in our database, you will receive an email to complete our Member Database form before your registration can be confirmed.
WAITLIST POLICY
If you are registering and live outside of HASDC’s service area, you will be placed on a waitlist. If space is available, we will reach out to you via email to confirm registration for this event.
SPONSOR (Patrocinador)
Thank you to our sponsor for partnering with us to make this educational program possible.