Sickle Cell Disease Accessing The New Frontier Sickle Cell Disease can be considered a global disease, in that it
affects patients in many countries, including the US, countries
in Europe, Africa, the Caribbean, the Middle East, and India. It
affects children, as well as adults.

Have you been diagnosed with Sickle Cell Disease?
Does your child have Sickle Cell Disease?

Webinar 011 Sickle Cell Disease – The New Frontier – Part 2,  will take place on 28 May 2021. Don’t miss out. Register now.

28 MAY


8:00 AM PST
11:00 AM EST


4 hours 

There’s No Better Time To
Register for webinar 011
Than The Present!

Webinar 010 is free to patients and parents of children with Sickle Cell Anemia.

During Webinar 010 we will review curative approaches. Our focus will be CRISPR, Gene Therapy, and Stem Cell Transplantation Approaches.

Professional patient advocates will be asked to make a small donation of 5 USD payable by PayPal or Credit/Debit Card at using the Donate button. Other professionals who wish to attend for educational purposes will be asked to make a donation of $10. Sickle Cell Brochure 26 January 2021




by Dr. Lorna Speid, President of
Putting Rare Diseases Patients First!®

Hear from Sponsor and Dignitaries.

Overview of Sickle Cell Disease and a research focus Keynote Presentation

Dr. Elizabeth Klings, Associate Professor of Medicine, Director, Center for Excellence in Sickle Cell Disease, Boston Medical Center.


Kemi Williams 54Gene
Dr. Gary Schiller – UCLA
Dr. Akshay Sharma – St. Jude Children’s Hospital

Interview – Mrs. Scherika Perry and Daughter Rhiannon Perry. Hear from Rhiannon Perry, who was cured of Sickle Cell Anemia and Lupus. Rhiannon and Mrs. Perry will answer questions in an interview format.

Final Questions and Answers



During Webinar 011, You
Will Learn The Following

About the new treatments
for Sickle Cell Disease

Why it is important to consider taking part
in clinical trials for Sickle Cell Disease

How Sickle Cell Disease clinical
trials are designed.

Why you need to know about
Sickle Cell Disease clinical trials.

Inclusion and Exclusion Criteria for
Sickle Cell Disease Clinical Trials.

Questions you need to ask before going
into a Sickle Cell Disease clinical trial.


About Stem Cell Transplantation

About Gene Therapy Approaches

How to Find Clinical Trials

How other patients and parents have managed Sickle Cell Disease challenges.

Reminder – If you have sickle cell disease
you should register for Webinar 011

We regret that recordings may not be provided for these Webinars, depending
on the questions raised and answered during them. We want to ensure that
patients and parents feel comfortable asking questions in a confidential way.

Before you leave, make sure that you
take the PRDPF! Research Survey. Help us to represent you to policy makers.

Take our confidential Research Survey. We are conducting this research survey so that we can advise policy makers about the needs of patients with rare diseases. This is a confidential research survey. We will be analyzing the results and sharing them with you, and perhaps as a publication or a white paper. Our target is 1000 participants. Help us reach this goal.


Find out more about
Putting Rare Diseases Patients First!®

Find out about the
members of the Board
of Directors

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