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.

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.

DATE | TIME (Fecha | Hora)

Saturday, February 25, 2023 | 9:00AM – 2:00PM
Location: San Diego Zoo Safari Park
Venue: Hunte Nairobi Pavilion

San Diego Zoo Safari Park
15500 San Pasqual Valley Rd.
Escondido, CA 92027

Parking: Complimentary parking for ONE car per registered family.
Update 2.15.23: Parking passes have been emailed to all registered attendees.

Weather: 51 | Rain (please plan attire accordingly; venue is covered)

CHILDCARE (cuidado de ni´ños)

Complimentary childcare will be provided for children ages 4-12 only. Children will participate in a tram tour and a behind the scenes animal presentation. Young adults 13 and older are expected to participate in the educational program. Children under 4 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.

SPONSORS (Patrocinadores)

Join us in-person for an evening of education. Our Educational Dinner Programs are open to all individuals with a bleeding disorder and their immediate family members.

DATE | TIME (Fecha | Hora)

Thursday, February 16, 2023 | 6:00PM – 8:00PM
Location: Puesto (Mission Valley)

Puesto (Mission Valley)
5010 Mission Center Rd.
San Diego, CA 92108

PROGRAM LANGUAGE (Idioma del programa)

Presented in English | Presentado en ingles

TOPIC (Tema)

“HEMGENIX (etranacogene dezaparvovec-drlb): Gene therapy Education Program“
This educational program offers you and your family members the opportunity to:

• Learn about HEMGENIX, the first and only gene therapy approved for Hemophilia B.
• Gain insightful information and deepen your understanding of HEMGENIX through a LIVE Q&A session.
• Ask questions and receive new resources on gene therapy.

SPEAKERS (Presentadores)

Guy Young, MD
Director, Hemostasis & Thrombosis Program Children’s Hospital Los Angeles

Denise Atkinson
Manager, Coagulation Products, CSL Behring

AGENDA (Agenda)

6:00 PM Arrive at Puesto
6:15 PM Dinner Begins
6:30 PM Welcome & Program Begins
8:00 PM Program Concludes

REGISTRATION (Inscripción)

Registration for this program is now closed.

SPONSOR (Patrocinador)

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

Join us in-person for an evening of education. Our Educational Dinner Programs are open to all individuals with a bleeding disorder and their immediate family members.

DATE | TIME (Fecha | Hora)

Thursday, March 16, 2023 | 6:00PM – 8:00PM

Location:
Puesto (Mission Valley)
5010 Mission Center Rd.
San Diego, CA 92108

PROGRAM LANGUAGE (Idioma del programa)

Presented in English | Presentado en ingles

TOPIC (Tema)

“Sounds Familiar?: A thought-provoking team competition and discussion based on familiar hemophilia challenges“

100 points are on the board. Survey says?! Join the bleeding disorders community and BioMarin for this fun, interactive program where two teams will play for bragging rights and learn what others have said their top challenges are in living with severe hemophilia A. Will we agree, disagree or land somewhere in the middle with the trials and tribulations faced by ourselves or loved ones? There’s only one way to find out. Come play, join the conversation and express yourself with us—Game on!

SPEAKERS (Presentadores)

Billy Duckworth
Senior Account Manager – Hemophilia, BioMarin

AGENDA (Agenda)

6:00 PM Arrive at (Location TBD)
6:15 PM Dinner Begins
6:30 PM Welcome & Program Begins
8:00 PM Program Concludes

REGISTRATION (Inscripción)

Registration for this program will close on March 16, 2023

SPONSOR (Patrocinador)

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

The National Hemophilia Foundation (NHF) will be hosting its annual Washington Days advocacy event as a virtual experience this year. 

NHF’s Washington Days is an opportunity for people affected by inherited blood disorders to advocate for issues that are important to them. In 2021, Washington Days had more than 400 volunteer advocates from 45 states that met with legislators and staff to discuss federal funding for bleeding disorder programs and support policies that increase affordability of coverage and access to care.

Registration opportunities and Issues will be announced soon.

DATE | LOCATION

March 8-10, 2023 | Washington D.C.

REGISTRATION

Please click here for more information on how to register.

QUESTIONS

Please address any additional registration or housing questions to:

Alla Vaynshteyn
NHF Meetings Specialist
avaynshteyn@hemophilia.org

For any other concerns, please contact:
advocate@hemophilia.org

Join us on April 17 as we celebrate World Hemophilia Day. This program is open to all individuals with a bleeding disorder and their immediate family members.

DATE | TIME (Fecha | Hora)

Monday, April 17, 2023 | 6:00PM – 8:00PM

Location:
Phil’s BBQ (Sports Arena)
3750 Sports Arena Blvd.
San Diego, CA 92110

PROGRAM LANGUAGE (Idioma del programa)

Presented in English | Presentado en inglés

TOPIC (Tema)

This World Hemophilia Day, come together with your hemophilia family to learn about the science behind factor activity levels and bleed protection – and explore the possibilities that protection may bring.

SPEAKER (Presentador)

Cynthia Chavez
Community Relations & Education Core Manager (CoRe)

AGENDA (Agenda)

6:00 PM Arrive at venue
6:30 PM Welcome & Program Begins
8:00 PM Program Concludes

REGISTRATION (Inscripción)

Registration for this program is now closed.

SPONSOR (Patrocinador)

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