Page 4 - HFA Dateline 2021 Q1 Spring

Hemophilia Organizations
Release COVID-19
Vaccination Guidelines
The World Federation of
Hemophilia, European
Association for Haemophilia
and Allied Disorders, European
Haemophilia Consortium and the
National Hemophilia Foundation
collaborated to develop
guidelines on the COVID-19
HFA Partners with RareDiseaseLive to vaccination for patients with
Share On-Demand Video on Hemophilia A bleeding disorders. Their hope is
hemophilia treatment centers, in
Hemophilia Federation of America, the National Hemophilia close collaboration with patient
Foundation and the National Organization for Rare Disorders organizations, take action to
partnered to provide “A Closer Look at Hemophilia Management: inform people with bleeding
Improving Outcomes with Personalized Care,” an on-demand disorders about the COVID-19
session presented by RareDiseaseLive. The interactive, expert-led vaccines and contribute to an
education activity addresses questions from patients and families effective vaccination program.
regarding their treatment and overall care, tips for working The guidelines include how to
with a health care team, and helpful strategies other families work the vaccination into an
have employed to address day-to-day challenges. It features a infusion schedule, whether there
pediatric specialist with expertise in hemophilia, an advanced are contradictions with other
practice provider, an HFA patient advocate, and parent of a child diseases or treatments and how
with hemophilia. The session is presented by RareDiseaseLive it should be administered.
supported by an educational grant from Genentech.
Read the full list of
Watch the session at guidelines at https://bit.ly/
www.rarediseaselive.com/hemophilia-a. WFHCOVIDVaccineGuidance.

HFA to Offer Regular Chat
for Blood Sisters
Hemophilia Federation of America recently
hosted its first SisterSpace, a new virtual safe
space for women with a diagnosed bleeding
disorder or those seeking diagnosis. This online
get-together will be a space for adult women
to engage in conversation with other blood
sisters across the country. Future SisterSpace
dates and times will be shared on HFA’s social
media and website at www.hemophiliafed.org.

4 DATELINE FEDERATION < www.hemophiliafed.org