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Rare Bleeding Disorders Conference

Rare Bleeding Disorders Conference

Rare Bleeding Disorders Conference 2020

**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.

If you or a member of your family has been diagnosed with FX (factor ten), FVII (factor seven), FXIII (factor thirteen) deficiencies, or Glanzmann’s thrombasthenia, we encourage you to register for this educational 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—please check this page for updated conference dates.

OVERVIEW OF PROGRAM* :

  • A welcome reception just for families affected by these rare bleeding disorders
  • Educational sessions specific to FX, FVII, and FXIII deficiencies, as well as broader sessions for other rare factor deficiencies and a session for rare platelet disorders, such as Glanzmann’s thrombasthenia. Additionally, there will be topics that are relevant across these rare conditions. 

*Please continue to check this page for an updated overview of the virtual program*

 

HOW TO REGISTER:

Please check back soon to learn more about how to register for this event.

 

FREQUENTLY ASKED QUESTIONS:

Is the Rare Bleeding Disorders Conference still happening? I applied for the Rare Bleeding Disorders Conference, what happens to my application now that the conference is virtual?
The Rare Bleeding Disorders Conference will not take place as in person meeting. NHF has had to make the difficult decision to take the meeting virtual. If you applied for the in person Rare Bleeding Disorders Conference you will be contacted by an NHF Staff member regarding your application.

 

When is the virtual Rare Bleeding Disorders Conference?
The date of the virtual Rare Bleeding Disorders Conference will be announced in the coming weeks. Please look back to this page in the next few weeks.

 

Who is eligible to attend the virtual Rare Bleeding Disorders Conference?
Any individuals with a rare bleeding disorder and family members are invited to attend the virtual rare bleeding disorders conference. The rare bleeding disorders conference will cater to individuals and family members with the following bleeding disorders; Factor 7 deficiency, Factor 13 deficiency, Factor 10 deficiency, Glanzmann’s thrombasthenia, other rare platelet disorders, and other ultra rare factor deficiencies. This conference will not have content specific to hemophilia A or B, or VWD.

 

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. Registration links will be made available soon.

 

My question isn’t listed above. Who should I reach out to?
For additional questions please reach out to rares@hemophilia.org

 

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 bring back our Rare Bleeding Disorders Conference, an educational program for families affected by rare bleeding disorders, specifically FX, FVII, FXIII and platelet disorders, such as Glanzmann’s thrombasthenia. 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.

If you or a member of your family has been diagnosed with FX (factor ten), FVII (factor seven), FXIII (factor thirteen) deficiencies,  Glanzmann’s thrombasthenia, rare platelet disorder or a rare factor deficiency we encourage you to participate in the National Hemophilia Foundation’s 2020 conference. 

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