PrintFriendly

Print Friendly, PDF & Email

Rare Bleeding Disorders Conference

Rare Bleeding Disorders Conference

**Update: Due to the COVID-19 pandemic, NHF has decided to host the 2020 Rare Bleeding Disorders Conference virtually. By creating a virtual environment, we will make the experience consistent with the top-level education you are used to receiving from NHF. Please continue to check this page for further updates.

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). The resources available to those consumers living with rare bleeding disorders are quite limited. This conference 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.

If you or a member of your family has been diagnosed with FX (factor ten), FVII (factor seven), FXIII (factor thirteen), Factor 5 (V ), Factor 11 (eleven), deficiencies, Bernard Soulier Syndrome, a rare platelet disorder or Glanzmann’s thrombasthenia, we encourage you to register for the Rare Bleeding Disorders Virtual Conference  to learn more about living with a rare bleeding disorder and connect with others facing similar situations. The program will be hosted as a separate event from NHF’s Bleeding Disorders Conference.

 

OVERVIEW OF PROGRAM* :

  • The virtual conference will take place Monday August 30, 2020 – Friday September 4, 2020.
  • A virtual welcome reception just for families affected by these rare bleeding disorders
  • Educational sessions specific to FV, FXI, FX, FVII, and FXIII deficiencies, Glanzmann’s Thromabastenia, Bernard Soulier Syndrome and a rare platelet disorders. Additionally, there will be topics that are relevant across these rare conditions. 
  • For youth ages 6 – 17 years, NHF will host the first ever virtual Camp Unite for youth with rare bleeding disorders and siblings

 

HOW TO REGISTER:

Please click here to learn more and register for the 2020 Rare Bleeding Disorders Virtual Conference on the conference website.

 

FREQUENTLY ASKED QUESTIONS:

I applied for the Rare Bleeding Disorders Conference, what happens to my application now that the conference is virtual?

If you applied for the in person Rare Bleeding Disorders Conference you will be contacted by an NHF Staff member regarding your application.

 

Do you have to pay to attend the virtual Rare Bleeding Disorders Conference? Do I need to register to attend?

No, you do not have to pay for the virtual conference. However, you must register all attendees for the conference.

 

Where do I register my child for Camp Unite?

There is a separate registration for the Rare Bleeding Disorders Virtual Conference Camp Unite experience. Please use the website link above to learn more and register.

 

My question isn’t listed above. Who should I reach out to?

For additional questions please reach out to rares@hemophilia.org