All posts by Nooshin Kosar

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-park lot.

AGENDA

Saturday, June 29, 2024

  • Registration & Exhibitor Booths Open
  • Welcome
  • Plenary Session & Lunch
  • Breakout Sessions
  • Plenary Sessions Continued
  • Hotel Check-In
  • Plenary Sessions Continued
  • Dinner & Evening Activity

Sunday, June 30, 2024

  • Morning paddle on the San Diego Bay
  • Exhibitor Booths Open
  • Breakfast & Plenary Session
  • Closing Remarks

REGISTRATION & FEE

All attendees are required to pay a $35 non-refundable registration fee.

Registration Deadline: June 21, 2024

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.

Camp Dragonfly

HASDC’s Camp Dragonfly has been serving the teens of San Diego and Imperial Counties since 2014. Camp Dragonfly is an outdoor adventure summer camp, hosted by the Hemophilia Association of San Diego County in partnership with Rady Children’s Hospital Hemophilia & Thrombosis Treatment Center. Camp Dragonfly serves campers affected with hemophilia, von Willebrand’s disease, platelet disorders, and other rare chronic bleeding disorders from San Diego and Imperial Counties. 

WHO CAN ATTEND CAMP?

HASDC’s Camp Dragonfly is for our teen campers, ages 14-18, diagnosed with a bleeding disorder (given priority), carriers and their siblings. Campers must be 14-years old on the first day of camp in order to attend. Siblings must attend with their affected sibling in order to attend. Campers diagnosed with a bleeding disorder must independently manage all personal care and mobility, which includes being able to self-infuse or administer factor product. Those living within San Diego & Imperial Counties will be given priority.

WHY ATTEND CAMP?

Camp Dragonfly provides teens with the tools they need to overcome the challenges presented to them by their disorder as well as connect with peers, gain leadership skills, test personal limits and the opportunity to commune with nature. By attending Camp Dragonfly, campers will experience camping and an outdoor program which challenges at both the individual and group levels.

Professional medical staff from Rady Children’s Hospital Hemophilia & Thrombosis Treatment Center are on site for duration of the camp program.

CAMP COST

Each camper is to pay a non-refundable $45.00 registration fee. Additional camp costs are underwritten by grants and funds raised by HASDC’s Unite for Bleeding Disorders Walk.

DATES | LOCATION

Monday, July 8 – Friday, July 12, 2024
ETC River Camp – Lotus, CA

ABOUT & TRAVEL

Join us as we return to rafting on the South Fork of the American River. Come experience the beauty of the South Fork, and the excitement, challenge and connection to nature that comes with whitewater rafting. This is a memorable adventure, perfect for those who have spent time on the river before or novice paddlers.

We will be tent camping for five days and four nights at the ETC (Environmental Traveling Companions) River Camp’s riverfront property located in Lotus, CA. Along with rafting, participants will be sleeping under the stars (tent optional), cooking all meals in their full outdoor kitchen, enjoying group activities and nightly campfires. Please note: there will be accessible bathrooms but no showers.

July 8, 2024: Attendees will travel via plane from San Diego to Sacramento
July 12, 2024: Attendees will travel via plane from Sacramento to San Diego

REQUIRED FORMS

Please make sure you have all the required camper information, including health information and documents, provided below, ready to submit either in your application or via email to HASDC.

You will need to provide and/or upload the following documents:

  • HASDC Physicians Form: to be completed by your local Hemophilia Treatment Center (HTC). Date of your child’s last comprehensive visit with the HTC but be within 12-months of the first day of camp (July 8) OR completed by primary care physician (if child does not have a bleeding disorder) showing physical examination within 12-months of the first day of camp (July 8). 
  • Medications: complete list of medications your child takes (includes but not limited to factor, other prescription meds, over the counter medications, inhalers, etc.)
  • Insurance Card: copy of your child’s insurance card, front and back. 
  • Immunization Records: a copy of your child’s immunization records, signed and validated by your primary care physician. The following immunizations/vaccinations are required: DTap (Diphtheria/Tetanus/Pertussis), MMR (Measles/Mumps/Rubella), Measles, Varicella (chicken pox), Polio, Hepatitis A & B, and COVID-19 (highly recommended). 
  • ETC Health & Liability Release: please complete this form and upload when asked in the application.

CAMPER REGISTRATION

Registration for our teen camp is now closed.
If you have questions regarding Camp Dragonfly or your camper’s application, please contact our office.

STAFF REGISTRATION

HASDC will email potential staff directly with registration instructions.

PROGRAMMING PARTNERS

In addition to working with Environmental Traveling Companions (ETC) for our river trip, we are excited to be partnering with GutMonkey to bring you a unique and interactive experience.  Thank you GutMonkey for partnering with HASDC to provide programming and camp support for Camp Dragonfly this year.

THANK TO OUR SPONSORS

Thank you to our sponsors and supporters for making camp possible this year.

Camp Firefly

REGISTER TODAY!

HASDC’s Camp Firefly has been serving the youth of San Diego and Imperial Counties for over 20 years. Camp Firefly is a weekend camp experience hosted by the Hemophilia Association of San Diego County in partnership with Rady Children’s Hospital Hemophilia & Thrombosis Treatment Center. Camp Firefly serves campers affected with hemophilia, von Willebrand’s disease, platelet disorders, and other rare chronic bleeding disorders from San Diego and Imperial Counties. 

Join us on a wildlife adventure! Pack up your “trunk” for a sleepover adventure at the San Diego Zoo Safari Park. All sleepovers include camp activities, an after-hours look at the wild lives of wildlife, guided walks, s’mores around the campfire, and more. Join us as we connect with peers and learn self-infusion techniques, while exploring the park after dark.

*Camper Family Picnic
Join us the next day, Sunday, July 28, at the San Diego Bay from 11:00AM – 3:00PM, for water activities and lunch, at our camper family picnic. This portion of camp is open to registered campers and their families. Must have a child ages 7-14 to attend our camper family picnic. A parent/guardian must be in attendance; no dropping off of campers.

WHO CAN ATTEND CAMP?

HASDC’s Camp Firefly is for campers, ages 7-14, diagnosed with a bleeding disorder (given priority), carriers and their siblings. Campers must be 7-years old on the first day of camp in order to attend. Siblings must attend with their affected sibling in order to attend. Campers must independently manage all personal care and mobility. Those living within San Diego & Imperial Counties will be given priority.

WHY ATTEND CAMP?

Camp Firefly provides youth with the tools they need to overcome the challenges presented to them by their disorder as well as lead healthy, vibrant and more importantly, full lives. By attending Camp Firefly, campers will gain independence, connect with peers, experience bleeding disorder education and attend self-infusion training provided by our local HTTC staff. Learning to self-infuse is an important rite of passage for children living with a bleeding disorder as most often their parents have performed this task since they were infants. Learning self-infusion is a critical step towards gaining independence.

Medical staff from Rady Children’s Hospital Hemophilia & Thrombosis Treatment Center are on site for duration of the camp program.

CAMP COST

Each camper is to pay a non-refundable $25.00 registration fee. Additional camp costs are underwritten by grants and funds raised by HASDC’s Unite for Bleeding Disorders Walk.

DATES

July 26-27, 2024 | Roar & Snore at San Diego Zoo Safari Park

July 28, 2024 | Camper Family Picnic*
11:00AM – 3:00PM at the San Diego Bay

CAMPER DROP OFF/PICK UP

Friday, July 26, 2024 | 3:30PM Camper Drop-Off
Campers to be dropped off by guardian at the San Diego Zoo Safari Park.

Saturday, July 27, 2024 | 1:30PM Camper Pick-Up
Campers to be picked up by guardian at the San Diego Zoo Safari Park.

REQUIRED FORMS

Please make sure you have all the required camper information, including health information and documents, provided below, ready to upload, before completing your application.

You will need to provide and/or upload the following documents:

  • Medical History
  • Insurance Card: copy of your child’s insurance card, front and back. 
  • $25 Non-Refundable Application Fee: be ready to process your application fee via credit card at the end of the application. 

CAMPER REGISTRATION

Camper registration deadline is June 21, 2024

CAMP SPONSORS & SUPPORTERS

Thank you to our sponsors & supporters who make camp possible.

Women & Girls Retreat

SAVE THE DATE!

Join us for a day of conversations, connections and support. If you are a woman or teen affected by a bleeding disorder, please join us at this special event designed for you. All women and girls ages 14+ are encouraged to attend – diagnosed, caregivers, carriers, undiagnosed, living in HASDC’s service area.

You will have the opportunity to connect with friends old and new, meet with staff from Rady Children’s Hospital HTTC and UC San Diego Health HTTC, as well as network with industry representatives at the exhibitor booths.

DATE

Saturday, August 10, 2024

REGISTRATION
Registration table opens at 9:00AM

LOCATION
Coming soon.

PARKING
Parking is available in the parking lot.

AGENDA

Saturday, August 10, 2024

  • Registration & Exhibitor Booths Open
  • Welcome
  • Plenary Sessions
  • Breakout Sessions
  • Lunch
  • Plenary Sessions Continued
  • Afternoon Activity

REGISTRATION

Registration Deadline: July 31, 2024

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.

Familia de Sangre

REGISTER NOW

The four California bleeding disorders organizations invite you and your family to join us for the 8th Annual Familia de Sangre, a two-day conference on blood disorders with all programming presented in Spanish.

Educational sessions and networking opportunities covering healthcare, education, mental health and support services


REGISTRARSE AHORA

Las cuatro fundaciones de trastornos sanguíneos de California lo invitan cordialmente a usted y a su familia a la 8ta conferencia anual, Familia de Sangre, una conferencia de dos días sobre desórdenes sanguíneos con toda la programación presentada en español.

Sesiones educativas y oportunidades de networking que cubriran asistencia médica, educación, salud mental y servicios de apoyo.

DATE | FECHA

September 6-8, 2024 | 6-8 de septiembre de 2024

Anaheim Marriott
700 W Convention Way
Anaheim, CA 92802

REGISTRATION | REGISTRO

Registration for Familia de Sangre is NOW OPEN!

Join us at the largest all Spanish speaking bleeding disorders conference in the nation. Register before June 30th for Early Bird pricing. 

Familia de Sangre is the largest bleeding disorders conference completely in Spanish. The conference will take place September 6-8 at the Anaheim Marriott in Anaheim, CA. 


Acompáñenos en la conferencia sobre trastornos hemorrágicos de habla hispana más grande del país. Regístrese antes del 30 de junio para precios “Early Bird.”

Familia de Sangre es la conferencia más grande sobre trastornos sanguíneos completamente en español. La conferencia será del 6 al 8 de septiembre en el Anaheim Marriott en Anaheim, CA. 

HASDC’s SCHOLARSHIP APPLICATION

The Hemophilia Association of San Diego County will be providing limited local scholarships for this year’s Familia de Sangre Conference. Submitting a scholarship application through the Hemophilia Association of San Diego County DOES NOT guarantee acceptance. As scholarship funding is limited, applications will be reviewed by HASDC and acceptance will be dependent on the order the application is received and that ALL required fields are complete, accurate, and submitted. Priority will be given to first time attendees. 

Eligibility
Must live in San Diego or Imperial Counties and currently be in HASDC’s database.

Application submission is now closed.

We will notify applicants of acceptance by end of day Friday, June 21, 2024.

THANK YOU TO OUR CONFERENCE SPONSORS |
GRACIAS A NUESTROS PATROCINADORES DE LA CONFERENCIA

Unite Walk

Welcome to the Hemophilia Association of San Diego County’s 11th Annual Unite for Bleeding Disorders Walk. We look forward to getting together at Liberty Station – NTC Park to raise vital funds for the San Diego bleeding disorders community. 

DATE | TIME

Saturday, October 26, 2024 | 9:00AM – 1:00PM

WALK DAY

Schedule of Events

  • 9:00AM: Registration will open, exhibit booths, refreshments
  • 10:00AM: Unite for Bleeding Disorders Ceremony will begin. 
  • 10:30AM: 5k Unite Walk will begin! 

Recognitions & Prizes

  • Top Fundraising Team
  • Top Fundraising Industry Team
  • Top Individual Fundraiser

Individual participants who raise or make a minimum donation of $25 will receive a Unite for Bleeding Disorders Walk T-Shirt (while supplies last) and a wristband for lunch. 

HOW TO PARTICIPATE

Join us in person! Register and join us at Liberty Station Park on Saturday, October 26 and walk a 5k. 

Join us virtually. Walk 11 miles! Register as a virtual walker, start raising money as you walk, run, hike or bike 11 miles at home, in your neighborhood or around town safely. The great thing about being a virtual walker, is you can pick any location, time, and length. This is also a great chance to invite relatives or friends to join you and experience the San Diego Unite Walk virtually with our community. 

Share with us “Why I Walk.” The San Diego Unite Walk has always been about celebrating our community and families. Going virtual will be no different. All posts shared with us will be entered into a drawing for a prize on walk day! 

When sharing on social media, use hashtag #UniteWalkSD
Follow us on Instagram @hasdc and on Facebook

Support HASDC! More than ever people living with bleeding disorders in San Diego and Imperial Counties are in need of our support. Make a team or join an existing team. Reach out to family or friends to support our mission and consider making a personal donation if you are able. 

DONATE TODAY

When making a donation via check, please make checks payable to Hemophilia Association of San Diego County. Make sure to include the name of the Team or Individual Walker you are supporting. 

Checks may be sent to:
Hemophilia Association of San Diego County
3550 Camino Del Rio North, Suite 105
San Diego, CA 92108

WALKER | TEAM REGISTRATION

SPONSORS

Thank you to the Unite Walk program National Sponsors for your continued support.

Educational Dinner Program

Join us an evening of education. Our Educational Dinner Programs are open to all individuals with a bleeding disorder and their immediate family members living in HASDC’s service area. 

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. 

DATE | TIME (Fecha | Hora)

Thursday, June 8, 2023 | 6:00PM – 8:00PM

LOCATION
Fogo de Chão
668 Sixth Ave.
San Diego, CA 92101

PARKING
Public parking lot across the street from restaurant. Parking will be $1 per hour.

PROGRAM LANGUAGE (Idioma del programa)

Presented in English | Presentado en inglés

TOPIC (Tema)

“Introducing Investigational Gene Therapy Clinical Trials for Hemophilia”
Do you have questions about the clinical trial process for hemophilia gene therapy research?

Join us for an interactive session which dives into the journey of considering, deciding about, or participating in an investigational hemophilia gene therapy clinical trial. This session is intended for any community member, those who are affected by hemophilia and those who support them. Our aim is to provide a space for active consideration so that session participants walk away feeling more informed and empowered.

SPEAKER (Presentador)

Guillermo Campillo
Senior Patient Education Liaison, Spark Therapeutics

Guillermo Campillo is the liaison between Spark Therapeutics and non-profit patient advocacy groups/organizations in the hemophilia and other bleeding disorder communities, with the goals of communicating information about gene therapy and helping develop educational materials with input from the community. Guillermo has six years of industry and advocacy experience from his business development and hemophilia community specialist roles in the biopharma world. Guillermo also spent five years prior volunteering with the National Hemophilia Foundation and chapters, serving on the board of the Colorado Chapter of the National Hemophilia Foundation and contributing as part of the Diversity Working Group and Steps for Living at the National Hemophilia Foundation. Guillermo received a B.S. in Business Administration with a double major in international business and marketing with a minor in Spanish from the University of Colorado. In Addition, Guillermo obtained a Certificate of Genetics and Genomics from Stanford University. 

AGENDA (Agenda)

5:45 PM Arrive at Fogo de Chão (please arrive on time)
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 as we have reached capacity.

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.

SPONSOR (Patrocinador)

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

Women & Girls Retreat

Join us for a day of conversations, connections and support. If you are a woman or teen affected by a bleeding disorder, please join us at this special event designed for you. All women and girls ages 14+ are encouraged to attend – diagnosed, caregivers, carriers, undiagnosed, living in HASDC’s service area.

You will have the opportunity to connect with friends old and new, meet with staff from Rady Children’s Hospital HTTC and UC San Diego Health HTTC, as well as network with industry representatives at the exhibitor booths.

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. 

DATE | TIME

Saturday, June 17, 2023 | 9:00AM – 2:30PM

LOCATION
Rady Children’s Hospital San Diego – Education Office Building
7960 Birmingham Dr.
San Diego, CA 92123

PARKING
Parking is available in the North Visitors Parking Garage on Children’s Way (across from the HTC clinic). Parking costs will be covered.

WALKING DIRECTIONS FROM NORTH VISITORS PARKING
– Walk toward the Medical Office Building across the street.
– Head south toward Rose Pavilion Emergency Room.
– Walk the path between the Hahn and Rose building (past the ER) through the archways.
– Walk under the white canopies and around the cul-de-sac to the EOB.
– Follow HASDC signage.

AGENDA

REGISTRATION

Registration Deadline: June 16, 2023

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.

SPONSORS

Thank you to our sponsors who have made this program possible.

Industry Symposium & Back to School Event

Novel Therapies: What’s Upcoming for the Bleeding Disorders Community


Join us for our annual Industry Symposium & Back to School Event. You will have the opportunity to learn about Gene Therapy, product updates and enjoy an afternoon on the bay! Participants will also have the opportunity to visit bleeding disorder industry representatives at the Exhibitor Fair. Our programs and events are open to individuals with a bleeding disorder, carriers, immediate family members/caregivers living in HASDC’s service area. This event will be presented in English. 

Back to school giveaways for children/teens in attendance will be provided. 

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. 

DATE | TIME

Saturday, August 26, 2023 | 9:00AM – 3:00PM

LOCATION
Courtyard by Marriott San Diego Airport/Liberty Station
2592 Landing Rd.
San Diego, CA 92106

PARKING
Complimentary parking in Marriott parking lot.

REGISTRATION TABLE
HASDC’s registration table can be found outside the hotel. Please arrive on time as the registration table will be closing at 9:45AM and we will be unable to provide entry past that time.

AGENDA

SAN DIEGO BAY WATER ACTIVITIES

Join us for a morning of education and an afternoon on the San Diego Bay. Participants will be able to enjoy paddle boarding and kayaking on the bay after lunch. Please indicate your preference on your registration form.

Items to bring:
– Blanket/towel for the grass
– Sunscreen
– Swimsuit or clothes appropriate for paddle boarding/kayaking
– Hat

CHILDCARE

Complimentary childcare will be provided for children ages 3-12 only. Young adults 13 and older are invited 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.

REGISTRATION

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.

SPONSORS

Thank you to our sponsors for making this event possible.

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. 

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. 

DATE | TIME (Fecha | Hora)

Wednesday, October 4, 2023 | 6:00PM – 8:00PM

LOCATION
Seasons 52 (UTC Mall)
4505 La Jolla Village Dr.
San Diego, CA 92122

PARKING
Public parking in lot outside of restaurant. Parking will be $2 after two hours (make sure to validate your parking in the restaurant).

PROGRAM LANGUAGE (Idioma del programa)

Presented in English | Presentado en inglés

TOPIC (Tema)

“Gene Therapy in Hemophilia: Come find out what all the buzz is about—from curiosity to eligibility and beyond”

Gene Therapy has arrived! Join us for a one-hour presentation to hear how gene therapy is designed to work and why eligibility testing is the first step on the gene therapy journey. We’ll share the findings from a clinical trial and what it could mean for you. Learn how to get started, what questions to ask your doctor, and hear one patient’s experience.

SPEAKER (Presentador)

Billy Duckworth
Sr. Account Manager, Gene Therapy, BioMarin

AGENDA (Agenda)

5:45 PM Arrive at restaurant (please arrive on time)
6:15 PM Welcome & Program Begins
6:30 PM Dinner Begins
8:00 PM Program Concludes

REGISTRATION (Inscripción)

Registration for this program is now closed as we have reached capacity.
Please contact our office if you would like to be added to the Waitlist.

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.

SPONSOR (Patrocinador)

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