HFA's Rural Needs Summit (virtual)
HFA's first-ever summit geared entirely toward the needs and treatment of rural community members will feature major stakeholders, patient organizations, and community members speaking on issues related to barriers to care for rural community members. Click here to register.
Winterfest and Community Education Event
Join us from 10:00 AM - 2:00 PM for some winter fun, education, and enjoying time with our bleeding disorder family. Please register below.
Camp Warren Jyrch
Camp Warren Jyrch will be back in 2025 and we are looking forward to seeing all your kids! Be on the lookout for the registration form. To be sure you receive the information regarding camp registration right away, please sign up below to be notified of the open registration.
Community Connections Statewide Conference: The Journey of a Lifetime
Join us for an enriching family education weekend, a time dedicated to learning, bonding, and community building for all ages. This weekend offers a variety of programs, provided in both English and Spanish, designed to engage every member of your family in meaningful and enjoyable ways.
Click here to register with a form to mail in
Click here to register online
Hello Talk: Beyond Bleeding Disorders: Recipe for a Healthy Lifestyle
Email Lily (lschwartz@bdai.org) by October 20 to register!!
A healthy lifestyle can really move you! Use healthy eating habits to fuel your body and improve your emotional well-being. Get tips on how to fuel smart when you are out or on the run.
Hispanic Heritage Celebration
Registrate aqui!
Unise con Takeda en conjunto con Bleeding Disorders Alliance Illinois, y Hispanic Bleeding Disorders Alliance para nuestra Celebración de Herencia Hispaña!
Vamos a pasar una tarde muy divertida con sesión educativa, música, comida, rifa, piñata, y otras actividades.
Habra un premio para la persona que venga mejor vestida/o con ropa de su país nativo hispano.
Todos son bien venidos a este evento. Sesión educativa será en español.
____
Join Takeda in conjunction with Bleeding Disorders Alliance Illinois, and Hispanic Bleeding Disorders Alliance for our Celebration of Hispanic Heritage!
We are going to a fun evening with an educational session, music, food, raffle, piñata, and other activities.
There will be a prize for the person who comes best dressed in clothes from their native Hispanic country.
Everyone is welcome to this event. Educational event will be in Spanish.
Register here!
BDAI, BCDI, and BDH: Educational dinner (free)
“Optimizing Outcomes beyond Treatment: The value of comprehensive care for individuals with bleeding disorders”
In this interactive presentation, Dr. Tarantino will explain the importance of expert care at comprehensive care clinics, which have a log-term track record of providing timely diagnosis, treatment plans, and optimal outcomes for persons with bleeding disorders.
Fall Family Fun
Reconnect with your inner child while picking apples with your BDAI family! We'll enjoy a shared meal while learning more of our wellness journey. The day will be packed with exciting activities like visiting the petting zoo, playing mini golf, and zooming down the zip lines. We can't wait to kick off this fall season together!
Many thanks our sponsors for making this event possible!
Novo Nordisk - presenter and sponsor
Hemabiologics - sponsor
Soleo - sponsor
NBDF’s National Bleeding Disorders Conference
The National Bleeding Disorders Foundation (formally NHF)’s 76th Annual Bleeding Disorders Conference (BDC) will take place September 12-14, 2024, in Atlanta! We are excited to bring the bleeding disorders community together again for three incredible days of educational sessions, valuable networking opportunities, and exciting exhibits at the Georgia World Congress Center.
BDAI and Bayer present Infusion Best Practices (Spanish)
Se anima a los asistentes a participar de forma activa en la charla.
Los asistentes pueden aprender unos de otros y enfocarse en métodos de resolución de problemas ante los desafíos cotidianos derivados de la vida con hemofilia.
No dude en hacer llegar esta invitación a cualquier persona que crea que podría beneficiarse de esta experiencia.
Para para cualquier pregunta o información adicional, comuníquese con Armando Serrano.
Registrate aqui!
Annual Meeting & Awards
Join your BDAI community as the board presents the year's happenings as well as what’s to come. BDAI will provide dinner, and you can bring your favorite dessert to share - and vote for winner of all things sweet!
Conversaciones con el CoRe: Cuenta su Historia
Registrar aquí!
Tu Conexíon Educativa.El conocimiento es poder y la educación es la clave que desbloquea ese poder. Sanofi organiza un programa que puede resultarle útil mientras vive la vida con hemofilia.
Conversaciones con el CoRe: Cuente su historia La vida con hemofilia significa que a menudo tendrá que abogar por usted mismo ante médicos, empleadores, colegas, amigos y seres queridos. En este programa, hablaremos sobre cómo contar su historia y cómo crear mensajes personales significativos y convincentes.Alojada por:Jessie Pindilli Y Cathy Marquez-VelascoCoRe Manager (608)516-2131jessie.pindilli@sanofi.com
Dia: Friday, August 16, 2024
Tiempo: 06:30 PM - 08:30 PM CDT
Localizacíon:Fulton Market Kitchen 311 N Sangamon St Chicago, IL, 60607
Confirme su asistencia con su capítulo local.Space is limited! This program will be presented in Spanish.Confirme su asistencia a Lily en lschwartz@bdai.org con el número de su grupo. Este programa será presentado en español. Estacionamiento en garaje disponible una cuadra al este; inclúyalo en su confirmación de asistencia si necesita alojamiento especial en el estacionamiento.
A Bleeding Disorders Alliance Illinois & Sanofi Event
Registrar aquí!
Camp Warren Jyrch
Due to unforeseen circumstances, Camp Warren Jyrch is canceled for this year. Please visit bdai.org/camp to learn about other camp opportunities for this summer.
Vivir Con Un Trastorno de Sangrado: Conviértase en Su Mejor Defensor
Vivir Con Un Trastorno de Sangrado: Conviértase en Su Mejor Defensor
Unirse con nosotros para un programa sobre abogacía presentada por Martha Boria Negron de Novo Nordisk en conjunto con Bleeding Disorders Alliance Illinois. Vamos a hablar de 5 herramientas poderosas que le ayudaran a aprender la autodefensa, es decir, como identificar lo que necesita y como puede comunicar eficazmente esas necesidades a los demás.
Learn about Roctavian for severe hemophilia A with BioMarin
What is ROCTAVIAN? ROCTAVIAN is a one-time gene therapy used for the treatment of adults with severe hemophilia A who do not have antibodies to the virus, AAV5 which is determined by a blood test. ROCTAVIAN uses a modified virus, called a vector, to deliver a working copy of the Factor VIII gene to liver cells to enable your body to produce clotting factor on its own, which helps the blood to clot and prevents or reduces the occurrence of bleeding. The modified virus does not contain viral DNA and does not cause disease in humans.
Sanofi: Your Education Connection for hemophilia A
Knowledge is power, and education is the key that unlocks that power. Sanofi is hosting a program that you may find helpful as you navigate life with hemophilia A.
Discover more about a first-in-class hemophilia A treatment. Join other members of the community for this interactive presentation, led by a CoRe, a healthcare provider, and a real patient’s experience switching treatments. RSVP today to reserve your spot!
Hosted by:
Jessie Pindilli, CoRe Manager
(608) 516-2131
jessie.pindilli@sanofi.com
Bradley Krueger Scholarship Workshop
BDAI is excited to offer a workshop for high school Juniors, Seniors, and current college students looking to apply for the Bradley Krueger Scholarship.
When: June 6th, 2024
Time: 5:30 PM - 8:00 PM
Where 210 S Des Plaines St., Chicago, IL
Springfield Legislative Days
EVENT CANCELLED
WE NEED COMMUNITY REPRESENTATIVES TO JOIN US IN SPRINGFIELD!
BDAI’s annual Springfield Legislative Days empowers individuals in the Illinois bleeding disorders community to impact the legislative process. We will provide training before the actual advocacy day so that each participant learns how to tell his or her story to the legislator. We will also practice a meeting before we make our legislative visits. Visits will be done in assigned groups (not individually). You will be educated and provided with materials about key issues. At the end of the training and mock meeting, you will be able to comfortably and effectively share information with legislators.
Springfield Legislative Days provide the opportunity to:
Meet face-to-face with your legislators who shape healthcare policy about bleeding disorders
Become involved in the decision-making regarding the critical issues that affect the continued access to the medications you or a family member need
Let your elected officials know what it is truly like to live with and be impacted by a bleeding disorder
Please note that this event requires business attire (no jeans, tee shirts, sneakers, etc). Please refrain from wearing clothing with company logos. Bring anything you may have used in the past to explain bleeding disorders in less than 5 minutes to legislators (such as short but impactful personal stories, photos, etc.). Children are a great way to personalize your story and are welcome to attend!
VERY IMPORTANT NOTICE: Please individually register every single person in your party who is attending and be sure to include the full address with zip code!
When: May 8th - 9th
Where: Hotel to be announced, Springfield, IL
All participants MUST attend the training on Wednesday night!
Tentative Agenda:
Wednesday, May 8 2024
3:00 PM – Arrive at Hotel to be announced (MUST be there by 6 pm)
6:30 PM – Welcome and Overview
6:45 PM – Dinner
7:15 PM – Legislative Advocacy Training
Thursday, May 9 2024
7:30 AM – Breakfast
8:30 AM – Depart to Capitol
9:00 AM – Arrive at Team Meeting Room
9:15 AM – Legislative Visits
12:00 PM - Re-group at Team Meeting Room for Group Photo
12:30 PM – Observation of Legislature in Session
1:00 PM – Depart Springfield
To register, please use this link: REGISTER HERE
Diamond Jubilee Gala
This year, BDAI is celebrating 75 years of serving the Illinois bleeding disorders community. The 75th Anniversary Diamond Jubilee is your chance to make a difference for children and adults with bleeding disorders. Donations received will help support those with bleeding disorders across the state. Thank you in advance for your generous donation.
The 75th Anniversary Diamond Jubilee details:
When: Saturday May 4th, 2024
Time: 6:00 PM (CST)
Where: Chicago Marriot Southwest
1200 Burr Ridge Parkway
Burr Ridge, IL 60527
Early Bird Registration: $100 per person or $800 for a table of 10 [if registered by April 15th]
Registration: $150 per person or $1000 for a table of 10 [after April 15th]
*Registration information must include all the names of those who are attending*
For a table reservation, contact Lily Schwartz at (312) 427-1497.
Thank you for your generous donations which allow us to fulfill our mission!
Please note that a block of hotel rooms has been set aside for our group at a discounted rate of $149 per night. Call the Marriott at 630.986.4100; be sure to state that you are part of the BDAI Diamond Jubilee Gala, or follow this link: RESERVE ROOM. The cut-off date for special pricing is April 12th.
For additional information or questions about the 75th Anniversary Diamond Gala, please contact Lily Schwartz at (312) 427-1497.
To register for this event, please click this link: REGISTER
Meet Jivi - Bayer
This program will include information about Jivi and how you can use the medication. Also, this program will present information on Jivi such as indication and usage, dosing overview, and clinical studies. This presentation will also highlight data on the pharmacokinetic coverage of Jivi.
This event will be presented in Spanish.
Date: 4/26/2024
Time: 6:00 PM CST
Where: Hyatt Place Chicago Midway Airport, 6550 South Cicero Ave, Chicago
To register, please use this link: REGISTER
Este programa incluirá información sobre Jivi y cómo puede usar el medicamento. Además, este programa incluye información sobre Jivi, como su indicación y su uso, la descripción general de la dosis y los estudios clínicos. Esta presentación también destacará los datos sobre la cobertura farmacocinética de Jivi.
Este evento será presentado en español.
Para registrarse, por favor use este link: REGISTRAR
Fecha: 26 de Abril
Hora: 6:00 PM (CST)
Donde: Hyatt Place Chicago Midway Airport, 6550 South Cicero Ave, Chicago
World Hemophilia Day
On April 17, 2024, the global bleeding disorders community will come together to celebrate World Hemophilia Day. The theme of the event this year is “Equitable Access for All: Recognizing All Bleeding Disorders”. The World Federation of Hemophilia (WFH) vision of Treatment for All is for a world where all people with inherited bleeding disorders have access to care, regardless of their type of bleeding disorder, gender, age, or where they live.
For more information, please visit: https://wfh.org/world-hemophilia-day/
When: April 17th, 2024
Time: 6:00 PM (CST) - 8:00 PM (CST)
Where: The Royal Sonesta Chicago Downtown
Address: 71 East Wacker Drive Chicago, IL, 60601
Please note that this event is limited to 50 registrants.
To register, use this link: Register Here
Thank you to Sanofi for sponsoring this event.
Dia Mundial de la Hemofilia
6:00 PM 8:00 PM
The Royal Sonesta Chicago Downtown (map)
Google Calendar ICS
El 17 de abril de 2024, la comunidad mundial de trastornos de la coagulación se reunirá para celebrar el Día Mundial de la Hemofilia. El tema del evento de este año es “Acceso equitativo para todos: reconocer todos los trastornos de coagulación”. La visión de Tratamiento para Todos de la Federación Mundial de Hemofilia (FMH) es la de un mundo en el que todas las personas con trastornos de coagulación hereditarios tengan acceso a la atención medica, independientemente de su tipo de trastorno de coagulación, género, edad o lugar de residencia.
Para obtener más información, visite: https://wfh.org/world-hemophilia-day/
Cuándo: 17 de abril de 2024
Hora: 6:00 PM (CST) - 8:00 PM (CST)
Lugar: The Royal Sonesta Chicago Downtown
Dirección: 71 East Wacker Drive Chicago, IL, 60601
Tenga en cuenta que este evento está limitado para 50 personas inscritas.
Para registrarse, utilice este enlace: Regístrese Aquí
Gracias a Sanofi por patrocinar este evento.
HFA Symposium
Register today for the Hemophilia Federation of America (HFA) 2024 Symposium, April 11-13, 2024, in Indianapolis!
This event features opportunities to connect with your friends, family and members of our community, valuable educational sessions, and the sights of beautiful downtown Indianapolis.
There will be sessions on advocacy, pain management, addiction, parenting, and women and girls, and more! Plus, HFA will have an exciting Final Night Event!
For information on scholarships and registration, visit HFA Symposium
HEMLIBRA - Educational Event
Únase a Genentech para una presentación educativa sobre HEMLIBRA. En este evento, podrá aprender y preguntar sobre todos los aspectos del tratamiento con HEMLIBRA.
Cuándo: 23 de marzo de 2024
Hora:
Llegada - 5:30 PM (CST)
Comienza el evento - 6:00 PM (CST)
Dónde: Francesca's en 95th, 6248 95th St., Oaklawn, IL 60453
Tenga en cuenta que los asientos para este evento son limitados
Este evento es lleno, y la inscripción está ahora cerrada.
Join Genentech for an educational presentation regarding HEMLIBRA. At this event, you will be able to learn and ask about all aspects of HEMLIBRA treatment.
When: March 23rd, 2024
Time:
Check in - 5:30 PM (CST)
Event Begins - 6:00 PM (CST)
Where: Francesca's on 95th, 6248 95th St., Oaklawn, IL 60453
Please note, seating for this event is limited.
This event is full, and registration is now closed.
Strike Up Some Fun for Bleeding Disorders Awareness Month
Join us for a fun-filled afternoon at Bowlero Roselle where we will come together for fun, community, and new resources. For this event, shoe rental, food, and drinks will be provided.
When: March 16th, 2024
Time: 2:30 PM - 4:30 PM
Where: 1100 W Lake St., Roselle, IL 60172
Please register using this link: Register Here
NBDF's Washington Days
Make your voice be heard at NBDF’s Washington Days! Join us to promote advocacy in the Bleeding Disorders Community.
HEMGENIX National Webinar
Join us for the HEMGENIX National Webinar! During this virtual Webinar, there is an opportunity to hear from a doctor who has administered HEMGENIX. After the presentation, there will be a Live Q&A Session.
When: February 28th, 2024
Time: 6:30 PM - 7:30 PM (CST)
Where: Virtual
Bleeding Disorders Alliance Illinois 75th Anniversary Kick-Off
Sunday is Fun Day with BDAI! Come out to celebrate the 75th Anniversary of BDAI carnival style! We will have face painting, a magic show, balloons, food, and more. We will also have resources and information available about all of our 2024 events.
Where: 555 S Eola Rd, Aurora, IL 60504
When: February 18th, 2024
Time: 2:00 PM - 4:00 PM
Registration for this event is now closed.
HEMGENIX Webinar
Join us on February 15th for the Virtual HEMGENIX Webinar Presentation. The presentation will be approximately 30 minutes long with a Q & A session afterward. Please note, this presentation is for those (and family) living with Hemophilia B. This Webinar is presented by Dr. Maissaa Janbain, MD, MSCR of Tulane School of Medicine.
When: February 15th, 2024
Time: 6:30 PM (Check-In) and 7:00 PM (Presentation Begins)
Where: Virtual
Please register for this event by clicking this link: Register Here
A Zoom link will be sent on the day for all those that have reserved their spot.
Education Event
Guarde la fecha
Unirse a nosotros para nuestra última sesión educacional del ano. Tendremos una sesión educacional presentada por Takeda, “Reconocer y Responder a las Hemorragias.” Después una celebración chica para celebrar los días festivos. También tendremos una sesión de elefante blanco. Si desea participar, traiga un pequeño regalo valorado en $5.00 al evento y prepárese para divertirse. Verifique las fechas de vencimiento de cualquier dulce o regalo comestible.
Si tiene preguntas, por favor comuníquese con Maria, mherrera@bdai.org o ksheldon@bdai.org
Esta registracion ya está cerrada.
Cuando (When): Viernes 15 de diciembre 2023/Friday December 15, 2023, 6:00 PM CT
Ubicación (Location): Tuscany de Taylor Street
Dirección (Address): 1014 W Taylor Street, Chicago, IL 60607
Save the date! Join us for our last educational session of the year. We will have an educational session presented by Takeda, “Recognize & Respond to Bleeds.” We will also have a white elephant session. If you would like to participate, please bring a small gift valued at $5.00 to the event and get ready for some fun!
If you have any questions, please contact Maria at mherrera@bdai.org or Kent at ksheldon@bdai.org
This registration is now closed.
Winter Party-End of the Year Event
BDAI wants to celebrate with you and your family this year at our Winter Party Event.
Where: Holiday Inn Countryside
When: December 2nd, 2023
Address: 6201 Joliet Rd, Countryside, IL 60525
Time: 10:00 AM to 2:00 PM
On December 2nd, we will be hosting the BDAI Annual Event. Please come join us for games, food, and connecting with others in the community! December is a great time to share thanks and gratitude for the community. During lunch, there will be a short presentation.
Registration for this event is now closed.