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Living Rare: Rare Bleeding Disorders Education Series



Rare Bleeding Disorders Series logo


When you have an ultra-rare bleeding disorder, it can be difficult to find the kind of specialized support you need. You need to talk to experts who understand the nuances of your disorder, and a community that knows what you are going through. Living Rare is a four-part series that will enable you to learn more about managing the physical and emotional aspects of living with a rare bleeding disorder.

We invite you to register for the second part of the series addressing the topic of mental health held on Saturday, June 5, 2021 starting at 3:00PM EST/2:00PM CST/1:00PM MST/12:00PM PST/10:00AM HST. The event is free and open to everyone from around the world.


Event Agenda

Session I - 3:00PM ET to 3:50PM ET
Last year, the world changed before our eyes, which brought about various mental health issues and challenges, especially for the ultra-rare community. During this session, participants will learn from a panel of community members who will share obstacles and positive experiences they have faced during the pandemic, along with coping strategies and opportunities that helped and continue to help them remain optimistic during the most challenging moments. A mental health professional will moderate this session to provide an expert perspective on mental health and discuss their thoughts on how to focus the opportunities as we slowly ease our way back into the world.


Industry Roundtable with Bio Products Laboratory - 4:00PM ET to 4:30PM ET
Chat with our industry sponsors and learn about new products and programs.


Industry Roundtable with Takeda - 4:00PM ET to 4:30PM ET
Chat with our industry sponsors and learn about new products and programs.


Session II - 4:40PM ET to 5:30PM ET
After a challenging year driven by the COVID19 pandemic we are looking forward to a new normal. But how does re-entering society impact mental health and what are specific implications for the bleeding disorder community? In this session we will unpack this topic and receive practical advice from a mental health professional to combat the emotional toll. 


Industry Roundtable with CSL Behring - 5:30PM ET to 6:00PM ET
Chat with our industry sponsors and learn about new products and programs.


Sponsor Roundtable with Hemophilia Alliance - 5:30PM to 6:00PM ET
Chat with our sponsor and learn about programs.


Session III - 6:10PM ET to 7:00PM ET
In challenging times finding ways to support daily wellbeing is vital and this session offers an opportunity for you to build skills while connecting with other community members. Participants will learn improve physical, mental, and emotional health and develop a toolbox of strategies to promote positive wellbeing. 


For more information, please email Rares@hemophilia.org


CSL Behring Catalyst Biosciences Bio Products Laboratory
Hemophilia Alliance Takeda