Ultra-Rare Community Meet-Up Conference

You are cordially invited to participate in a Meet-Up Event for people affected by ultra-rare inherited bleeding disorders (URBDs). We know that you face significant challenges compared to the broader bleeding disorders community. Your disorders are often unknown to all but the most specialized hematologists. Unfortunately, even after diagnosis, those with URBDs report that they continue to feel isolated and at a disadvantage compared to others with more common bleeding disorders.

This event is an important step in identifying and addressing the of this community. It will help build a healthier and stronger experience for you and everyone who takes part in this important weekend. We look forward to coming together to build a stronger community – no matter how small – to learn empowerment strategies, overcome healthcare barriers, and create the resources needed to live life as others with bleeding disorders do today.

LIST OF CONDITIONS

* Factor I Fibrinogen

* Factor II (FII) deficiency, also called Prothrombin Deficiency

* Factor V (FV) Deficiency

* Factor VII (FVII) or Proconvertin Deficiency

* Factor X (FX), or Stuart-Prower Factor Deficiency

* Factor XI (FXI) Deficiency

* Factor XII (FXII) Deficiency, also called Hageman Factor Deficiency

* Factor XIII (FXIII) or Fibrin Stabilizing Factor Deficiency

* Alpha-2 Antiplasmin Deficiency

* PAI-1 Deficiency

* Bernard Soulier Syndrome Glanzmann Thrombasthenia

* Gray Platelet Syndrome

* Hermansky-Pudlak Syndrome

* Platelet Function Disorder, Hereditary (nonspecific)

* Platelet Release Defect

* Platelet Storage Pool Disease

* Hereditary Thrombocytopenia

* Hereditary Hemorrhagic Telangiectasia

* Ehlers-Danlos Syndromes

Registration is REQUIRED, click here!

Only people affected with a rare disorder (or a parent of someone with a rare disorder) will be accepted into the conference.