Patients are waiting. That is what motivates Mayo Clinic’s researchers in their quest for better treatments and cures. Clinical trials bridge the gap between research and patient care, and help a discovery become a therapy. The clinical trial journey is how a medical intervention — such as a drug, device, or procedure — moves from an idea into patient care. From the lab to research with the help of volunteers and through review and approval for use, this animation will help you understand the biomedical research pipeline.

Source: SCD C.A.R.E.S Consortium
https://drive.google.com/file/d/1dHujw3BlVqON3GkifXhnVWxV0eCMGlhd/view

CNN's Meg Tirrell sits down with Johnny Lubin, one of the first in the world to try a new kind of medicine that uses a gene-editing tool called CRISPR to offer a potential cure for sickle cell disease.

We believe in therapy! Visit our website ➡ sicklecelldisease.org to learn more about how therapy can make a difference in your life. Together, let's prioritize mental health and thrive on our journey with sickle cell disease.

Hey Pee Wee Pals Hey remember to eat a healthy diet. Staying hydrated and eating healthy is your way of helping your body be it’s best.

The National Organization for Rare Disorders is pleased to continue its collaboration with the Rare Disease Diversity Coalition (RDDC) on a three-part webinar series exploring equity in rare disease health care.
This serves as the final event in the series and is a discussion with rare disease patients from underserved populations about their experiences living with rare disorders and their perceptions of diversity, equity, and inclusion during the healthcare journey.

Source: National Organization for Rare Disorders (NORD)
https://www.youtube.com/watch?v=6AfE6zMTJrU

The National Organization for Rare Disorders (NORD®), in collaboration with the Rare Disease Diversity Coalition (RDDC), is pleased to announce the second webinar in a three-part series on health equity and rare disorders.
This webinar will focus on the role health care providers and health systems play in promoting diversity, equity and inclusion (DEI) in healthcare settings.
Experts will share perspectives and approaches for improving healthcare provider-patient interactions and strengthening infrastructure and systems to support DEI efforts.

Source: National Organization for Rare Disorders (NORD)
https://www.youtube.com/watch?v=-boUUhFlS3c

NORD is pleased to announce a collaboration with the Rare Disease Diversity Coalition (RDDC) on a three-part webinar series discussing the role that health care providers play in addressing health inequity in the rare disease community. The series will explore underlying issues that lead to inequities and encourage participants to evaluate their interactions with members of the rare disease community from marginalized groups.
The first part in the series discusses the disproportionate impact of rare disorders on communities of color, including barriers to access for early and accurate diagnosis, affordable health care, referrals to specialists, provision of educational and support services, and participation in clinical trials. This webinar is moderated by Dr. Georges Benjamin, Executive Director of the American Public Health Association, and feature a primary health care physician, a genetic counselor, and a rare disease patient advocate.

Source: National Organization for Rare Disorders (NORD)
https://www.youtube.com/watch?v=mPvHuunWzEU

In honor of our 50th anniversary, join us on YouTube and Facebook on Mondays for #MindfulMondays! This new wellness series will help us bring our community together and discover new paths to wellness. Dr. Marjorie Dejoie Brewer helped us launch this campaign this week by leading us through this mindfulness exercise.

Source: Sickle Cell Disease Association of America, Inc
https://www.youtube.com/watch?v=JXVQyvy1pc0

Source: Forma Therapeutics
https://www.youtube.com/watch?v=F4y9uN6TGwA