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.
All posts by Nooshin Kosar
BioMarin
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
HCC’s Advocacy & Access Ambassadors
Applications Now Open for HCC’s 2025 Advocacy & Access Ambassadors!
HCC is Searching for Community Members Who Want to Become Advocates. Is This YOU?
Would you like to help others in the bleeding disorders community by using your voice outside of Legislative Day? Become a Hemophilia Council of California (HCC) “Advocacy & Access Ambassador”! Applications are now open for 2025.
As an Ambassador, you will receive advocacy training and help lead grassroots advocacy efforts in California. The Ambassadors increase awareness of HCC at the four California Foundations, too. Most importantly, Ambassadors lead as advocates on legislative and health policy initiatives that are important to the bleeding disorders and rare disease community. This includes bringing Bleeding Disorders Awareness Month resolutions to their local City or School District and acting as team leaders at Legislative Day.
Who Can Apply?
This is a great program for any adults 18 years old or older to grow as advocates and continue on the work they may have started as Future Leaders if they attended the program in high school. Having been a Future Leader is not a requirement.
Application deadline is January 17, 2025
UCSD Health CBCD: Lunch & Learn (Jan 16th)
Register for Lunch & Learn
The Center for Bleeding and Clotting Disorders at UC San Diego Health is hosting their next Lunch & Learn on Thursday, January 16, 2024.
SPEAKER
Jessica House is a registered nurse, holistic health coach, and certified yoga instructor. She works with UC San Diego as a recreational instructor and is passionate about creating an environment for her students to explore mindfulness and connect deeply to themselves, each other and the natural world.
Food for Thought
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 will close on Wednesday, January 22, 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.
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, 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.
NBDF’s Washington Days
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.
HFA Symposium
REGISTER TODAY
The Hemophilia Federation of America (HFA) will be holding their annual Symposium March 27-30, 2025 here in San Diego!
- Valuable educational sessions for severe, milds, rates and more.
- Rap sessions and information for men, women, parents, and Spanish-speaking community members.
- Explore the latest products, services, and technologies designed to make life with a bleeding disorder more manageable.
- Connect with friends, who are like family, and end with a fun Final Night Event!
THIS IS NOT AN HASDC PROGRAM; ALL EXPENSES MUST BE PAID ON YOUR OWN.
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.
Food for Thought
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)
Wednesday, June 5, 2024 | 6:00PM – 8:00PM
LOCATION
Slater’s 50/50
2750 Dewey Rd. #193
San Diego, CA 92106
PARKING
Public parking in lot outside of restaurant.
PROGRAM LANGUAGE (Idioma del programa)
Presented in English | Presentado en inglés
TOPIC (Tema)
“Deciding If You’re Camp Ready”
When we think about sending our children to camp, many of us wonder, “are they ready to be on their own? Will they have friends? Will they infuse on schedule? Who will look out for them? What happens if…?” We’ll discuss these common fears and provide an in-depth look at the camp environment, including key elements such as socialization, self-advocacy, and support resources.
SPEAKER (Presentador)
Cynthia Chavez
Community Relations & Education Core Manager, Sanofi
AGENDA (Agenda)
5:45 PM Arrive at Slater’s 50/50 (please arrive on time)
6:00 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.
Men’s Retreat
Join us for a weekend of conversations, connections and support. If you are a gentleman affected by a bleeding disorder, please join us at this special event designed for you. All men ages 18+ are encouraged to attend – diagnosed and caregivers living in HASDC’s service area.
You will have the opportunity to connect with friends old and new, meet and interact with staff from UC San Diego Health HTTC, as well as network with industry representatives at the exhibitor booths.
DATE
Saturday, June 29 – Sunday, June 30, 2024
REGISTRATION
Registration table opens at 11:00AM
LOCATION
HYATT REGENCY Mission Bay Spa and Marina
1441 Quivira Rd.
San Diego, CA 92109
PARKING
Parking is available in the hotel self-parking lot.
AGENDA
Saturday, June 29, 2024
| TIME | AGENDA |
|---|---|
| 11:00AM – 12:00PM | Registration & Exhibitor Booths Open |
| 12:00PM | Welcome |
| 12:15PM – 1:15PM | Plenary Session & Lunch |
| 1:15PM – 2:15PM | Plenary Sessions Continued |
| 2:15PM – 2:45PM | Break |
| 2:45PM – 3:45PM | Hotel Check-In/Break & Exhibitor Booths Open |
| 4:15PM – 5:00PM | Plenary Sessions Continued |
| 5:30PM | Dinner & Evening Activity |
Sunday, June 30, 2024
| TIME | AGENDA |
|---|---|
| 8:00AM – 9:00AM | Morning paddle on the San Diego Bay |
| 9:00AM – 9:30AM | Break & Exhibitor Booths Open |
| 9:30AM – 11:00AM | Breakfast, Exhibitor Booths Open & Plenary Session |
| 11:00AM | Event Concludes |
REGISTRATION & FEE
Registration for this event 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.
SPONSORS
Thank you to our sponsors who have made this program possible.
