Happy Friday, everybody!
This week we’re highlighting a celebration of rare moms, thoughts on the value of prayer in the rare community, and a PBC patient offering guidance on how to explain a little-known condition to family and friends. We also have exciting news for patients with Hemophilia B.
Sit back and enjoy this week’s Editor’s Choice.
Primary Biliary Cholangitis: Now How Do I Explain This?
On top of the challenges a rare disease brings on its own, many people have to deal with the input of family and friends. PW Contributor Leslie offers a guide to help explain PBC to the people around you.
Read her account here.
Hemophilia B Could be Treated With Just a Single Injection
Rare disease treatment can be a pain– taking trips to different doctors and specialists, driving around the state or country. What if it could all be much easier? For Hemophilia B patients, that may become a reality.
Read about it here.
Rare Disease Families Pray for Each Other
PW Contributor Denise discusses the role that prayer played in her life as a mother of a child with a rare disease, and the deep bond and comfort it creates.
Read about it here.
In Celebration of My Fellow Rare Disease Moms: from the Mother of a Son with CGD
Being a mom is hard work, but being a mom dealing with the pressure, anxiety, and stress of accommodating a child’s rare disease is especially tough. PW Contributor Jennifer leads us in a round of applause for all the rare moms.
Read her article here.
