Diamond Blackfan Anemia Foundation

06/03/2026

GENE THERAPY WEBINAR LINK
The Diamond Blackfan Anemia Foundation relies on the generosity of our friends and families to continue funding critical research projects and educational initiatives. While visiting our website, please consider clicking the Donate Button and showing your support for our mission. Every gift helps and is appreciated!

DBAF is pleased to present the recorded educational webinar: Gene Therapy for Diamond Blackfan Anemia Syndrome: Progress, Possibilities, and Expectations.

The informational webinar, designed for patients, families, and caregivers, explores the evolving landscape of gene therapy for Diamond Blackfan Anemia syndrome. Leading researchers and clinicians share insights into innovative approaches, current advancements, and realistic expectations for the future of treatment.

Topics Covered:
An overview of gene therapy, including potential applications
Presentations from distinguished doctors/researchers highlighting their approach and rationale, recent progress, clinical trial expectations, and future goals
Discussion of potential benefits and risks
Insight into balancing hope and realistic expectations
Session covering practical steps to manage your health today and considerations for treatment availability and decision-making
A quick look at how your much-needed donations to the DBAF are making a significant impact
Q&A Session

Link is available on our website:

This live informational webinar is for patients, families, and caregivers exploring the evolving landscape of gene therapy for DBAS.

05/29/2026

WEBINAR LINK NOW AVAILABLE
The Diamond Blackfan Anemia Foundation relies on the generosity of our friends and families to continue funding critical research projects and educational initiatives. While visiting our website, please consider clicking the Donate Button and showing your support for our mission. Every gift helps and is appreciated!

DBAF is pleased to present the recorded educational webinar: Gene Therapy for Diamond Blackfan Anemia Syndrome: Progress, Possibilities, and Expectations.

The informational webinar, designed for patients, families, and caregivers, explores the evolving landscape of gene therapy for Diamond Blackfan Anemia syndrome. Leading researchers and clinicians share insights into innovative approaches, current advancements, and realistic expectations for the future of treatment.

Topics Covered:

An overview of gene therapy, including potential applications
Presentations from distinguished doctors/researchers highlighting their approach and rationale, recent progress, clinical trial expectations, and future goals
Discussion of potential benefits and risks
Insight into balancing hope and realistic expectations
Session covering practical steps to manage your health today and considerations for treatment availability and decision-making
A quick look at how your much-needed donations to the DBAF are making a significant impact
Q&A Session

This live informational webinar is for patients, families, and caregivers exploring the evolving landscape of gene therapy for DBAS.

05/19/2026

Congratulations and thank you to Senthil Bhoopalan, MBBS, PhD, FAA of St. Jude's Research Hospital for being named a Harrington Discovery Institute 2026 Scholar-Innovator Award Recipient! Dr. Bhoopalan received the award for his research in "Advanced Gene Therapy for a Rare Genetic Anemia (Diamond-Blackfan Anemia Syndrome)" 👏👏

May 12, 2026, CLEVELAND, Ohio - Harrington Discovery Institute at University Hospitals in Cleveland, Ohio, today announced the 2026 class of Harrington Scholar-Innovators. The scholar awards will support breakthrough new treatments for common and rare diseases, including cardiovascular, inflammatory...

05/18/2026

WOW!!! Thank you to all who attended last night's webinar, "Gene Therapy for DBAS: Progress, Possibilities, and Expectations," and thank you for all the amazing feedback and support today. It was mentioned in the beginning of the webinar that families from 39 US states and 30 (thirty!) countries registered for the meeting. The Diamond Blackfan Anemia Foundation is honored and humbled to be a part of your lives.
We are working on making a video recording available and will keep you updated when it is posted to our website.
Please visit our website now and take a peek at all the exciting work your donations have funded! We need your support to continue doing what we do. Please hit the "Donate Now" button while visiting. Every gift helps. Thank you!

05/16/2026

LAST CHANCE to learn more about gene therapy for DBAS. It's almost time and all are welcome! Please register now if you are planning to attend.
https://events.zoom.us/ev/AqMWkl7PsemMrhG3gPJzz5mo7c2FU16P9Mc61E7QcJ9loOVPOUwJ~AsmhBbx0mBwJZYkKycnUJkRjzGtKwubTL6dK3b9c5jzvnlNhWZZwLV_3NQ?fbclid=IwY2xjawRgqfZleHRuA2FlbQIxMQBzcnRjBmFwcF9pZBAyMjIwMzkxNzg4MjAwODkyAAEeWoVPTeF11X-eXqBLhqGhscm1rzJvhbNctNZfNjy71s58OMeJ7M-uU4ROxew_aem_eFEPZEf79gd90cZjO6nb0Q

05/14/2026

It's almost time and all are welcome! If you want to learn more about the progress and possibilities of gene therapy for DBAS, here's an opportunity. For planning purposes, please register asap if you are planning to attend.
https://events.zoom.us/ev/AqMWkl7PsemMrhG3gPJzz5mo7c2FU16P9Mc61E7QcJ9loOVPOUwJ~AsmhBbx0mBwJZYkKycnUJkRjzGtKwubTL6dK3b9c5jzvnlNhWZZwLV_3NQ?fbclid=IwY2xjawRgqfZleHRuA2FlbQIxMQBzcnRjBmFwcF9pZBAyMjIwMzkxNzg4MjAwODkyAAEeWoVPTeF11X-eXqBLhqGhscm1rzJvhbNctNZfNjy71s58OMeJ7M-uU4ROxew_aem_eFEPZEf79gd90cZjO6nb0Q

05/12/2026

Want to learn more about gene therapy for DBAS? Register soon!
https://events.zoom.us/ev/AqMWkl7PsemMrhG3gPJzz5mo7c2FU16P9Mc61E7QcJ9loOVPOUwJ~AsmhBbx0mBwJZYkKycnUJkRjzGtKwubTL6dK3b9c5jzvnlNhWZZwLV_3NQ?fbclid=IwY2xjawRgqfZleHRuA2FlbQIxMQBzcnRjBmFwcF9pZBAyMjIwMzkxNzg4MjAwODkyAAEeWoVPTeF11X-eXqBLhqGhscm1rzJvhbNctNZfNjy71s58OMeJ7M-uU4ROxew_aem_eFEPZEf79gd90cZjO6nb0Q

05/08/2026

REGISTER SOON! Space is limited and spots are filling up quickly!

The Diamond Blackfan Anemia Foundation is pleased to present the upcoming educational webinar: Gene Therapy for Diamond Blackfan Anemia Syndrome: Progress, Possibilities, and Expectations.
This live informational webinar, designed for patients, families, and caregivers, will explore the evolving landscape of gene therapy for Diamond Blackfan Anemia syndrome. Leading researchers and clinicians will share insights into innovative approaches, current advancements, and realistic expectations for the future of treatment. Please note: We encourage early registration as space is limited. To allow for broader participation, we kindly request one registration per household, if possible.
What to Expect:
- An overview of gene therapy, including potential applications
- Presentations from distinguished doctors/researchers highlighting their approach and rationale, recent progress, clinical trial expectations, and future goals
- Discussion of potential benefits and risks
- Insight into balancing hope and realistic expectations
- A closing session covering practical steps to manage your health today and considerations for treatment availability and decision-making
- If time allows, a Q&A session with presenters

Date: Sunday, May 17, 2026
Time: 7:00pm EDT
Where: Online ZOOM webinar
Registration Link: https://events.zoom.us/ev/AqMWkl7PsemMrhG3gPJzz5mo7c2FU16P9Mc61E7QcJ9loOVPOUwJ~AsmhBbx0mBwJZYkKycnUJkRjzGtKwubTL6dK3b9c5jzvnlNhWZZwLV_3NQ?fbclid=IwY2xjawRgqfZleHRuA2FlbQIxMQBzcnRjBmFwcF9pZBAyMjIwMzkxNzg4MjAwODkyAAEeWoVPTeF11X-eXqBLhqGhscm1rzJvhbNctNZfNjy71s58OMeJ7M-uU4ROxew_aem_eFEPZEf79gd90cZjO6nb0Q

05/07/2026

The Diamond Blackfan Anemia Foundation is pleased to present the upcoming educational webinar: Gene Therapy for Diamond Blackfan Anemia Syndrome: Progress, Possibilities, and Expectations.
This live informational webinar, designed for patients, families, and caregivers, will explore the evolving landscape of gene therapy for Diamond Blackfan Anemia syndrome. Leading researchers and clinicians will share insights into innovative approaches, current advancements, and realistic expectations for the future of treatment. Please note: We encourage early registration as space is limited. To allow for broader participation, we kindly request one registration per household, if possible.
What to Expect:
- An overview of gene therapy, including potential applications
- Presentations from distinguished doctors/researchers highlighting their approach and rationale, recent progress, clinical trial expectations, and future goals
- Discussion of potential benefits and risks
- Insight into balancing hope and realistic expectations
- A closing session covering practical steps to manage your health today and considerations for treatment availability and decision-making
- If time allows, a Q&A session with presenters

Date: Sunday, May 17, 2026
Time: 7:00pm EDT
Where: Online ZOOM webinar
Registration Link: https://events.zoom.us/ev/AqMWkl7PsemMrhG3gPJzz5mo7c2FU16P9Mc61E7QcJ9loOVPOUwJ~AsmhBbx0mBwJZYkKycnUJkRjzGtKwubTL6dK3b9c5jzvnlNhWZZwLV_3NQ?fbclid=IwY2xjawRgqfZleHRuA2FlbQIxMQBzcnRjBmFwcF9pZBAyMjIwMzkxNzg4MjAwODkyAAEeWoVPTeF11X-eXqBLhqGhscm1rzJvhbNctNZfNjy71s58OMeJ7M-uU4ROxew_aem_eFEPZEf79gd90cZjO6nb0Q]

05/07/2026

Incredibly grateful for the dedication and brilliance of DBAS researchers. Thank you for your hard work, Dr. Lionel Blanc!

A new study led by scientists at Northwell Health’s Feinstein Institutes for Medical Research has revealed that defects in different ribosomal proteins lead ...