HAE patient Zahra Khan

3 Lessons from a patient who faced her dragon

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HAE patient Zahra
Featured Story

3 Lessons from a Patient Who Faced Her Dragon

Born with a rare, genetic disease, an HAE patient shared her story with CSL Behring staff in Kankakee, Illinois

12 Feb 2020
Parent with child on a riding toy

Parents, Kids and Rare Disease

When a rare disease is part of family life, expect a few extra challenges.

18 Feb 2020
PI patient Lynne Doebber

Video: On Patience and Hard-to-Diagnose Illnesses

Lynne Doebber, who was ill for decades before her diagnosis, offers advice to those still searching for answers.

17 Feb 2020
Audrey Hepburn by Steven Meisel

Audrey Hepburn - an Icon for Rare Disease Advocacy

EURORDIS-Rare Diseases Europe bestows posthumous honor on the actress and humanitarian; Hepburn’s son is an advocate for rare…

14 Feb 2020
Superhero patient

Get Some Animated Advice

Our hero patient takes on issues like being undiagnosed, how to talk to the doctor and getting support from friends.

13 Feb 2020
figure alone in the landscape

Rare As One

The Chan-Zuckerberg Foundation – yes, that Zuckerberg – awards $13.5 million in grants to rare disease patient groups.

11 Feb 2020
Couple holding heart balloons

When To Tell That Special Someone?

Those who live with rare and serious diseases wonder when to share their health status.

10 Feb 2020
two girls looking into microscopes

Women In Science Quiz

Did you know? February 11 is the International Day of Women and Girls in Science.

09 Feb 2020
Two friends outdoors in winter

Winter Advice from a Norway Native

Could “koselig” help you cozy up to the chilliest time of the year? Alpha 1 athlete Karen Skålvoll explains.

07 Feb 2020
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Family Adopts a Son Who Has Hemophilia

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Meet the Smith Family

A U.S. family opens their home, and hearts, to a new son who has hemophilia.

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