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Rare Bleeding Disorders Conference

Rare Bleeding Disorders Conference

Rare Bleeding Disorders Conference @ NHF’s Bleeding Disorders Conference

If you or a member of your family has been diagnosed with FVII (factor seven), FX (factor ten), FXIII (factor thirteen) deficiencies or Glanzmann’s thrombasthenia, we encourage you to apply for this educational conference to learn more about living with a rare bleeding disorder and connect with others facing similar situations. The program is being Thursday, October 3-Sunday, October 6, 2019 in conjunction with NHF’s Bleeding Disorders Conference in Anaheim, CA.

OVERVIEW OF PROGRAM:

  • A welcome reception just for families affected by these rare bleeding disorders
  • Educational sessions specific to FVII, FX, FXIII and Glanzmann’s thrombasthenia, as well as topics that are relevant across these rare conditions. The full conference program is available online.
  • Complimentary full access to NHF’s Bleeding Disorders Conference and child program
  • Complimentary hotel accommodations and travel (airfare) to Anaheim*
  • Sessions begin at 1:00pm on Thursday, October 3rd and end in a rare specific morning on Sunday, October 6th at 12:00pm.

HOW TO APPLY:

The application deadline has passed. If you already applied, NHF will be in contact by Wednesday, July 24, 2019 to update you on the status of your application.

NOTE: Spots are limited.  Application to the program does not guarantee acceptance. Applications will be reviewed on a rolling basis. This program is only open to US residents.

If you have any questions, please contact rares@hemophilia.org.

*Note: NHF will not be able to reimburse for ground transportation, luggage or food expenses for this conference.

SUMMARY

In the bleeding disorder community, the “rarest of the rare” (those with rare factor deficiencies and platelet disorders) often struggle with similar symptoms and challenges compared to more common bleeding disorders (hemophilia and VWD). While there are a wider variety of educational opportunities and support for those living with hemophilia and VWD, the resources available to those consumers living with rare bleeding disorders are quite limited. NHF is thrilled to launch its first Rare Bleeding Disorders Conference, an educational program for families affected by rare bleeding disorders, specifically FVII, FX, FXIII and Glanzmann’s thromasthenia. In the future NHF hopes to grow this program to include more rare bleeding disorders.

This is an opportunity for families affected by these rare bleeding disorder to attend rare specific educational sessions and meet other families in the bleeding disorder community, growing networks of support. While there are many rare bleeding disorder specific sessions, families are also free to attend other relevant sessions in the National Hemophilia Foundations’ Bleeding Disorder Conference, including topics on parenting, for women, and for teens, to name a few.

If you or a member of your family has been diagnosed with FVII, FX, FXIII deficiencies or Glanzmann’s thromasthenia, we encourage you to participate in the National Hemophilia Foundation’s 2019 conference. 

If you have any questions about the program, please email: rares@hemophilia.