Thrive’s Upcoming Events

Thrive with Pyruvate Kinase Deficiency Facebook Group for some future virtual events online!

Other Organizations

Webinar ABC Advocacy Week:  A Call to Action

ABC Advocacy Week:  A Call to Action:  Analyzing Trends Impacting the Nation’s Blood Supply and What Must Change Moving Forward

Monday, April 24, 2023 | 2:00 PM EST

Webinar ABC Advocacy Week:  Welcome Blood Donors:

ABC Advocacy Week:  Welcome Blood Donors: Promoting Awareness of New Eligibility CriteriaDate: 

Tuesday, April 25, 2023 | 3:00 PM EST

Webinar ABC Advocacy Week:  When Time Matters:

ABC Blood Advocacy Week:  When Time Matters:  Saving and Enhancing Lives Through Access to Blood

Wednesday, April 27, 2023 | 2:00 PM EST

Webinar ABC Advocacy Week:  It’s About Life:

ABC Blood Advocacy Week: It’s About Life:  Why Donor Diversity is Critical to Patient Care 

Thursday, April 28, 2023 | 2:00 PM EST

NORD Presents: LIVING RARE LIVING STRONGER (In-Person or Virtual)

Bring the rare disease community together in our nation’s capital for a day of learning, networking and fun! Hear real stories from our community and gain practical knowledge to help you live your best life while navigating your rare disease journey. (Complimentary onsite childcare available!)

Saturday, May 6, 2023

Renaissance Washington, DC Downtown Hotel

999 Ninth Street NW, Washington, District Of Columbia, USA, 20001

ERICA WP4 Webinar: Introduction on Patient-Reported Outcomes and consideration before including them in a clinical trial. Study case from the ERN-EuroBloodNet

The main objective of the webinar will be to give an overview of Patient-Reported Outcomes Measures (PROMs) and Patient-Reported Experience Measures (PREMs) in clinical research. Céline Desvignes-Gleizes from Mapi Research Trust will provide an introduction on PROMs and PREMs and accordingly,

Wednesday, May 10, 2023 12:30- 1:30 CEST

Pyrukynd Patient Program Meeting

Gather together with other people and families affected by
PK deficiency to hear Dr. Al-Samkari and Eva, a person living
with PK deficiency share more about Pyrukynd, a medication
to treat PKD and what it’s like to live with the disease. This is
an in-person event and lunch will be served.

Saturday, May 22, 2023 at 11:00 am – 2:00 pm EST,
The Westin Waltham Boston, 70 Third Avenue, Waltham, MA 02451

International PKD Day

The Pyruvate Kinase Deficiency Community invites everyone from around the world to participate in celebrating International PK Deficiency Day December 1,  2023. Our goal is to raise awareness of the needs and experiences of people living with PK Deficiency, their carers, and family members.

December 1st, 2023

More updates soon!

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