Hemophilia Council of CA

Hemophilia Council of CA

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Interested in how having a bleeding disorder can affect your rights when it comes to insurance and emergency care? Register for the Hemophilia Council of CA next webinar on October 13!
Did you know California has a program to help children with bleeding disorders with their healthcare? Join the Hemophilia Council of CA 9/15 at noon or 9/16 at 6:00pm to find out the benefits of the CCS Program and how to apply.

https://cchfsac.org/event/navigating-your-treatment-and-care/
Hemophilia Council of CA webinar on the impact of managed care on bleeding disorders treatment is tomorrow! Check out the details at https://cchfsac.org/event/navigating-bleeding-disorders-treatment-together/
You've heard of Kaiser, Anthem Blue Cross or HMOs, but what do they all have in common? They are all types of managed care. How can this impact your bleeding disorders treatment? And what strategies can you use to collaborate with your doctor under managed care?

Join the Hemophilia Council of CA in a conversation about working together toward best outcomes for your care in a managed care world. Visit http://bit.ly/HCCwebinar to register. Simultaneous Spanish interpretation will be provided.

Community members who attend the webinar will be entered to win one of two $25 gift cards from Amazon, Walmart or Target. Members of industry or Hemophilia Council of California staff are not eligible for this raffle.
This year has been difficult, and living with a bleeding disorder is hard. If you need somebody to lean on but don’t know where to find help, join Hemophilia Council of CA's webinar on either Wednesday, May 12th at noon or Thursday, May 13th at 6 PM to find out when and how to find mental health resources in California. Speaker Le Ondra Clark Harvey, Ph.D., is the CEO of the California Council of Community Behavioral Health Agencies. She will discuss how to find the right provider and how you’ll know if it is covered by your insurance. You can register at https://forms.gle/wssEKDTr1gYBaV5bA Two sessions to choose from: LIVE @ noon on 5/12 OR hosted replay of recording @ 6 PM on 5/13. Simultaneous Spanish interpretation available.
COVID-19 Vaccine Eligibility Update! As of March 15th, California has included those 16 and up with high risk medical conditions, disabilities and illnesses in COVID-19 vaccine eligibility. This includes ALL patients who are enrolled in either the Genetically Handicapped Persons Program (GHPP) or California Children’s Services (CCS) who are aged 16 and up. For more details, visit Hemophilia Council of CA blog: https://www.hemophiliaca.org/2021/03/23/2994/
Have you registered for our Advocacy Forum this Saturday? Today is the last day to register! Join us to hear from our speakers on "Tools for Self-Advocacy", how to "Put Yourself Out There", updates from the Hemophilia Council of CA and "COVID Vaccines & Bleeding Disorders" from Leonard A. Valentino, MD, President & CEO of National Hemophilia Foundation. Attendees will receive a $50 Target gift card.

🔗 Visit our website to register: https://hasdc.org/events/advocacy-forum/
Interested in participating in the Hemophilia Council of CA Virtual Future Leaders Program? There is still time to register! HCC’s program provides leadership training and advocacy tools for teens and young adults, ages 14-22, affected by bleeding disorders. Registration deadline this Friday, February 19!

🔗Link to register: https://www.hemophiliaca.org/programs/future-leaders-program/
Join the Hemophilia Council of CA for their first webinar of 2021.
Hemophilia Council of CA has a webinar coming up on Wed, 9/30 at 12:00pm. Register here:
https://www.hemophiliaca.org/programs/webinars/
If you have a bleeding disorder, join HCC for “GHPP: How to Apply or Renew Your Application”. GHPP is California’s Genetically Handicapped Persons Program, a State health care program that helps people with genetic disorders- like hemophilia- to afford their health care. This 30-minute webinar will give you tips on how to navigate the GHPP application and yearly renewals system. You will also learn what information you will need to include, how to access the application, how to submit your documents, expected timelines, and where to reach out for help with process. HCC will save some time for questions and answers at the end of the webinar.
the @hemophiliacouncilca legislative day is tomorrow! Am so excited! i had so much fun learning with these people and with my team!. #theredelephants

Creating a more effective and unified voice for individuals living with bleeding disorders in California. The four California hemophilia organizations formed the Hemophilia Council of California (HCC) in the 1970's.

In 1989 we became a 501(c)3 nonprofit organization to coordinate their shared advocacy agenda to create a more effective and unified voice for individuals living with bleeding disorders in California. Twenty-three years later, HCC continues to pursue its mission to provide public information and to coordinate activities which will promote and ensure the welfare of all California organizations repr

Operating as usual

In Memoriam - A Tribute to Val Bias - Hemophilia Council of California 01/07/2022

In Memoriam - A Tribute to Val Bias - Hemophilia Council of California

Val Bias was a shining light in the hemophilia and bleeding disorders community. We at the Hemophilia Council of California are saddened by his sudden passing on December 30th.

Val became the Executive Director of the Hemophilia Council of CA (HCC) in 2003, and under Val’s leadership until 2008, HCC continued to grow and expand its advocacy and collaborations with bleeding disorders stakeholders. Val used his experience and passion for working with the youth to create HCC’s influential Future Leaders Program, which has since trained generations of youth in bleeding disorders advocacy. Val also started HCC’s quarterly Health Care Access Forums and biannual Health Policy Summits, which have continued to be a valuable tool of collaboration to today.

HCC continues as a successful non-profit advocating for the bleeding disorders community today because of Val’s leadership and advocacy work!

We extend our deep condolences to his wife Robin and son Langston on his passing.

Donations can be made in Val's name to VAL BIAS TRIBUTE at the National AIDS Memorial website www.aidsmemorial.org

To read the full HCC memorial, please visit
https://hemophiliaca.org/in-memoriam-a-tribute-to-val-bias/

In Memoriam - A Tribute to Val Bias - Hemophilia Council of California Val Bias was a shining light in the hemophilia and bleeding disorders community. We at the Hemophilia Council of California are saddened by his sudden passing on December 30, 2021 in Buffalo, New York. As a child, Val was diagnosed with severe hemophilia B in New York State. Val moved to the Bay Are...

Timeline photos 01/05/2022

NHF's Washington Days will be virtual again this year, and registration is now open. A great opportunity to advocate at the national level-

Save the Date! NHF's Washington Days 2022 will be held March 1-2, 2022 and will be an entirely virtual experience. We can't wait to "see" you there! Please visit https://bit.ly/3Go2ZuJ to learn more about Washington Days and sign up!

Timeline photos 01/01/2022

Happy New Year 2022! We look forward to moving into the New Year together to bring greater access to care for all of the bleeding disorders community!

Happy New Year 2022! We look forward to moving into the New Year together to bring greater access to care for all of the bleeding disorders community!

Timeline photos 12/26/2021

Wishes for a Happy Kwanzaa from the Hemophilia Council of California!

Wishes for a Happy Kwanzaa from the Hemophilia Council of California!

Timeline photos 12/25/2021

The Hemophilia Council of California wishes the bleeding disorders community a Merry Christmas!

The Hemophilia Council of California wishes the bleeding disorders community a Merry Christmas!

12/24/2021

In 2022 HCC is starting the Advocacy and Access Ambassadors (A&AA) program! Volunteers have the opportunity to receive advocacy training and lead grassroots advocacy efforts in California.

Are you looking to share your story to help other community members by raising awareness of bleeding disorders?
Visit https://hemophiliaca.org/education/advocacy-ambassadors/
to find out how you can become and Advocacy & Access Ambassador!
Deadline to apply is January 3rd, 2022! #hemophilia #bleedingdisorders #vonwillebranddisease

In 2022 HCC is starting the Advocacy and Access Ambassadors (A&AA) program! Volunteers have the opportunity to receive advocacy training and lead grassroots advocacy efforts in California.

Are you looking to share your story to help other community members by raising awareness of bleeding disorders?
Visit https://hemophiliaca.org/education/advocacy-ambassadors/
to find out how you can become and Advocacy & Access Ambassador!
Deadline to apply is January 3rd, 2022! #hemophilia #bleedingdisorders #vonwillebranddisease

Share Your Rare Disease Story - EveryLife Foundation for Rare Diseases 12/22/2021

Share Your Rare Disease Story - EveryLife Foundation for Rare Diseases

"What’s Your Story?" Submissions Wanted for the EveryLife Foundation for Rare Diseases. They have launched "What's Your Story?", a new online rare disease story bank for advocates to share experiences on a wide-range of issues impacting the rare disease community.

Advocates are also invited to upload photos and videos that help illustrate the rare disease journey. Advocates of any age are welcome to submit stories.

Visit https://everylifefoundation.org/story/ to find out how you can win one of three $1,500 donations to a rare disease organization of your choice, such as the Hemophilia Council of California.

Share Your Rare Disease Story - EveryLife Foundation for Rare Diseases Sharing stories is one of the most powerful ways that we, as a rare disease community, can change policy and save lives. Stories inspire, educate and influence. Stories establish a greater connection to one another and help us remember and integrate what we learn. When a story captures the attention...

12/21/2021

The Hemophilia Council of California sends you our best wishes for the holidays, and we look forward to moving into the New Year together to bring greater access to care for all of the California bleeding disorders community. Below is a holiday message from the HCC Board President, Adam Wilmers-

12/18/2021

Are you an adult who wants more opportunities to advocate on behalf of the bleeding disorders community in California? HCC has launched our Advocacy and Access Ambassadors (A&AA) program to give volunteers a chance to receive advocacy training and help lead grassroots advocacy efforts in California. As an Ambassador, you will help increase awareness of Hemophilia, von Willebrand Disease, and other bleeding disorders and let our legislators know the challenges affected persons and their families face. Want to know more? Visit https://hemophiliaca.org/education/advocacy-ambassadors/
Ready to apply? Go to https://forms.gle/U9c8J4gQzCg4rD5J8
Deadline to apply is January 3rd, 2022!

Are you an adult who wants more opportunities to advocate on behalf of the bleeding disorders community in California? HCC has launched our Advocacy and Access Ambassadors (A&AA) program to give volunteers a chance to receive advocacy training and help lead grassroots advocacy efforts in California. As an Ambassador, you will help increase awareness of Hemophilia, von Willebrand Disease, and other bleeding disorders and let our legislators know the challenges affected persons and their families face. Want to know more? Visit https://hemophiliaca.org/education/advocacy-ambassadors/
Ready to apply? Go to https://forms.gle/U9c8J4gQzCg4rD5J8
Deadline to apply is January 3rd, 2022!

12/14/2021

ICYMI: In our November webinar our speakers Marla Feinstein, Senior Policy & Healthcare Analyst at NHF, and longtime advocate Randy Curtis, MBA provide you with important details about Medicare. In the following clip, see an overview of the four different parts of Medicare (A, B, C & D). View the entire webinar at https://hemophiliaca.org/webinars/past-webinar-navigating-your-care-and-treatment-a-medicare-example/

Timeline Photos 12/11/2021

HCC encourages our former Future Leaders who are 18 - 24 to apply for NHF's National Youth Leadership Institute (NYLI). It is a great opportunity to develop your leadership skills. Deadline to apply is in five days on Dec 15th, so there is still time to go online and submit your application.

The National Youth Leadership Institute (NYLI) is now accepting applications for the 2022 cohort through Dec 15! For more info and to apply to be part of this special program go to: www.hemophilia.org/NYLI.

12/09/2021

Thank you very much to all of our provider panelists- Kevin Shaughnessy, Dr. Quon, Dr. Wheeler, - and moderator Michael Bradley at last month's CANEXTions Summit! Your insights were so valuable in our discussion of novel therapies and how these therapies will lead to changes in the care delivery model! #bleedingdisorders #hemophilia #vonwillebranddisease

Thank you very much to all of our provider panelists- Kevin Shaughnessy, Dr. Quon, Dr. Wheeler, - and moderator Michael Bradley at last month's CANEXTions Summit! Your insights were so valuable in our discussion of novel therapies and how these therapies will lead to changes in the care delivery model! #bleedingdisorders #hemophilia #vonwillebranddisease

12/08/2021

Are you an adult who wants more opportunities to advocate on behalf of the bleeding disorders community in California? Are you a former HCC Future Leader looking to grow and use your new advocacy skills? HCC has launched our Advocacy and Access Ambassadors (A&AA) program to give volunteers a chance to receive advocacy training and help lead grassroots advocacy efforts in California.
Want to know more? Visit https://hemophiliaca.org/education/advocacy-ambassadors/

As an Ambassador, you will help increase awareness of Hemophilia, von Willebrand Disease, and other bleeding disorders and let our legislators know the challenges affected persons and their families face.
Ready to apply? Go to https://forms.gle/U9c8J4gQzCg4rD5J8
Deadline to apply is January 3rd, 2022!

Are you an adult who wants more opportunities to advocate on behalf of the bleeding disorders community in California? Are you a former HCC Future Leader looking to grow and use your new advocacy skills? HCC has launched our Advocacy and Access Ambassadors (A&AA) program to give volunteers a chance to receive advocacy training and help lead grassroots advocacy efforts in California.
Want to know more? Visit https://hemophiliaca.org/education/advocacy-ambassadors/

As an Ambassador, you will help increase awareness of Hemophilia, von Willebrand Disease, and other bleeding disorders and let our legislators know the challenges affected persons and their families face.
Ready to apply? Go to https://forms.gle/U9c8J4gQzCg4rD5J8
Deadline to apply is January 3rd, 2022!

12/06/2021

If you have met Dana, you know his dedication to his patients and his work. Upon his retirement from UCSF Medical Center, we honor Dana Francis, MSW- a social worker at the UCSF Medical Center who has worked with adults with bleeding disorders to provide them with resources and counseling. Dana has had a focus on addressing men’s emotional isolation and has helped people cope with the challenges of living with a bleeding disorder.

In 1988, Dana joined the Hemophilia Council of California thanks to a new, mental health grant-funded position as a health educator, and he worked with HCC for 12 years! We wish him the best in his retirement! HCC Board Member Mosi Williams will be filling Dana’s shoes as the new UCSF Medical Center social worker.

12/04/2021

Thank you to all of our wonderful guests at yesterday's Health Care Access Forum! We especially appreciate the Chief of the DHCS Pharmacy Benefits Division; He provided valuable information about Medi-Cal Rx -which starts January 1st- and answered all of our attendees' questions. Our guest speakers' participation in the Health Care Access Forums makes this wonderful exchange of information possible! We look forward to continuing the Forum series in 2022 to facilitate more invaluable health care access discussions.

Thank you to all of our wonderful guests at yesterday's Health Care Access Forum! We especially appreciate the Chief of the DHCS Pharmacy Benefits Division; He provided valuable information about Medi-Cal Rx -which starts January 1st- and answered all of our attendees' questions. Our guest speakers' participation in the Health Care Access Forums makes this wonderful exchange of information possible! We look forward to continuing the Forum series in 2022 to facilitate more invaluable health care access discussions.

12/03/2021

The World Federation of Hemophilia and the Canadian Hemophilia Society will be hosting #WFHCongress2022 — the first major hybrid event of the international #bleedingdisorders community next May 8 - 11, 2022, and registration is now open. The in-person component will be in Montréal with select sessions broadcast virtually: https://bit.ly/39SeKvf For more info or to register today, visit https://congress.wfh.org/

The World Federation of Hemophilia and the Canadian Hemophilia Society will be hosting #WFHCongress2022 — the first major hybrid event of the international #bleedingdisorders community next May 8 - 11, 2022, and registration is now open. The in-person component will be in Montréal with select sessions broadcast virtually: https://bit.ly/39SeKvf For more info or to register today, visit https://congress.wfh.org/

12/02/2021

Today is World AIDS Day- The Hemophilia Circle -https://www.aidsmemorial.org/hemophilia-memorial- at the National AIDS Memorial Grove provides a physical place where loved ones can remember those in the bleeding disorders community who lost their lives to this virus. HemAware has a wonderful article about the Hemophilia Circle at https://hemaware.org/community-pulse/memorial-honors-hemophilia-community-affected-aids

Today is World AIDS Day- The Hemophilia Circle -https://www.aidsmemorial.org/hemophilia-memorial- at the National AIDS Memorial Grove provides a physical place where loved ones can remember those in the bleeding disorders community who lost their lives to this virus. HemAware has a wonderful article about the Hemophilia Circle at https://hemaware.org/community-pulse/memorial-honors-hemophilia-community-affected-aids

11/30/2021

What does the Hemophilia Council of California mean to you?
Is it the Future Leaders Program or Legislative Day? Our monthly webinars about healthcare access and advocacy? Or perhaps our Phone2Action advocacy campaigns- on behalf of CCS and GHPP funding or supporting the step therapy bill AB 347.

All of these programs and advocacy work would not have been possible without the support of our community. This Giving Tuesday we need your help to carry on the legacy of advocacy and access so everyone with a bleeding disorder in California has access to the best health care and can achieve the maximum quality of life available to them.

See some ways you can support our work in the graphic above/below. Thank you for your support this Giving Tuesday!! Visit us at hemophiliaca.org

What does the Hemophilia Council of California mean to you?
Is it the Future Leaders Program or Legislative Day? Our monthly webinars about healthcare access and advocacy? Or perhaps our Phone2Action advocacy campaigns- on behalf of CCS and GHPP funding or supporting the step therapy bill AB 347.

All of these programs and advocacy work would not have been possible without the support of our community. This Giving Tuesday we need your help to carry on the legacy of advocacy and access so everyone with a bleeding disorder in California has access to the best health care and can achieve the maximum quality of life available to them.

See some ways you can support our work in the graphic above/below. Thank you for your support this Giving Tuesday!! Visit us at hemophiliaca.org

11/30/2021

Warmest Wishes for a Happy Hanukkah from the Hemophilia Council of California!

Warmest Wishes for a Happy Hanukkah from the Hemophilia Council of California!

¿Qué necesitan saber los pacientes acerca de Medi-Cal Rx? - Hemophilia Council of California 11/29/2021

¿Qué necesitan saber los pacientes acerca de Medi-Cal Rx? - Hemophilia Council of California

¿Está preparado para Medi-Cal Rx? Este nuevo programa que comienza el 1 de enero cambia la forma en que el estado de California procesa los pagos de medicamentos recetados, incluidos los productos de factor sanguíneo. El hecho más importante que debe saber sobre Medi-CalRx es que si usted o su hijo están inscritos en Medi-Cal, CCS o GHPP, deberían haber recibido una Tarjeta de información de beneficios (BIC) como parte de su proceso de inscripción.

Cuando Medi-Cal Rx entre en vigencia el 1/1/2022, es posible que el consultorio de su médico o la farmacia deban ver esta tarjeta (BIC) para que pueda recibir servicios en 2022. Si no tiene una tarjeta BIC, nunca la recibió uno o se perdió o se lo robaron; es importante que solicite una nueva Tarjeta de información de beneficios (BIC) lo antes posible. Para saber cómo y dónde solicitar uno, visite https://hemophiliaca.org/que-necesitan-saber-los-pacientes-acerca-de-medi-cal-rx-2/

¿Qué necesitan saber los pacientes acerca de Medi-Cal Rx? - Hemophilia Council of California Cuando Medi-Cal Rx empieza el 1 de enero de 2022, es posible que el consultorio de su médico o la farmacia necesiten ver esta tarjeta (BIC) para que pueda recibir los servicios en 2022.Si no tiene una tarjeta BIC, nunca la recibió o se la perdió o se la robaron, es importante que solicite una nue...

Medi-Cal Rx & BIC Card Update - Hemophilia Council of California 11/29/2021

Medi-Cal Rx & BIC Card Update - Hemophilia Council of California

Are you prepared for Medi-Cal Rx? This new program starting January 1st changes the way the State of California processes payments for prescription drugs, including blood factor products. The most important fact for you to know about Medi-CalRx is that if you or your child are enrolled in Medi-Cal, CCS or GHPP, you should have received a Benefits Information Card (BIC) as part of your enrollment process.

When Medi-Cal Rx goes into effect 1/1/2022, your doctor’s office or pharmacy may need to see this card (BIC) in order for you to receive services in 2022. If you don’t have a BIC card – never received one or it was lost or stolen- it is important for you to request a new Benefits Information Card (BIC) as soon as possible. To find out how and where to request one, visit https://hemophiliaca.org/medi-cal-rx-bic-card-update/

Medi-Cal Rx & BIC Card Update - Hemophilia Council of California On January 1, 2022 California is launching Medi-CalRx, a new program which changes the way the State of California processes payments for prescription drugs, including blood factor products. Medi-CalRx will apply to bleeding disorders patients who receive services from Medi-Cal, CCS and GHPP. You ma...

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