Join our monthly Community-Wide Sickle Cell Empowerment Circle, with Dr. Rashida Davis (@healtohear IG, FB, X)

Support & Empowerment groups provide a safe space to:

Meet others in the sickle cell community

Discuss the challenges related to living with sickle cell disease

Share your encouraging victories and life lessons with others

Gain valuable insight and resources that can help improve your quality of life

The #EmpowermentCircle is a dedicated #safespace where individuals impacted by #sicklecell can come together to share and learn from others in the sickle cell community.

Sharing your voice and experiences can empower you and others, and contribute to a sense of #community and #resilience.

Whether you are directly impacted by sickle cell or are a supportive family member or friend, your experiences are important.

#JoinTheCircle and find inspiration in telling your story and embracing the stories of others.

Join us in person at the Radisson Hotel, in Downtown St. Paul for an informative event discussing sickle cell disease in Minnesota and the latest advancements in gene therapy. Hear from Sickle Cell Foundation of MN and experts in the field while connect with others in the community. Don't miss this opportunity to stay informed and engaged. We look forward to seeing you there!

Join us as we hear from Vertex about Casgevy, their new Gene Therapy for Sickle Cell Disease

Join our monthly Community-Wide Sickle Cell Empowerment Circle, with Dr. Rashida Davis (@healtohear IG, FB, X)

Support & Empowerment groups provide a safe space to:

Meet others in the sickle cell community

Discuss the challenges related to living with sickle cell disease

Share your encouraging victories and life lessons with others

Gain valuable insight and resources that can help improve your quality of life

The #EmpowermentCircle is a dedicated #safespace where individuals impacted by #sicklecell can come together to share and learn from others in the sickle cell community.

Sharing your voice and experiences can empower you and others, and contribute to a sense of #community and #resilience.

Whether you are directly impacted by sickle cell or are a supportive family member or friend, your experiences are important.

#JoinTheCircle and find inspiration in telling your story and embracing the stories of others.

The National SCD Policy Forum brings together sickle cell advocates from across the country for a two-day federal advocacy event.

The National SCD Policy Forum brings together sickle cell advocates from across the country for a two-day federal advocacy event.

A global conversation about more than just our sickle cell! Join us to learn more about whole-person health, with Warrior Moms and Community Leaders, Biba Tinga and Rae Blaylark!

Join SickleCellMN at #Minnesota #RareDiseaseDay

Thu March 7, 2024

MN Rare Disease Advocacy Day

📍McNamara Alumni Center

🕑9am - 2pm

Join SickleCellMN on #Minnesota #RareDisease Advocacy Day at the Minnesota State Capital as we advocate on behalf of the Sickle Cell/Rare Disease Community!

Tue March 5, 2024

MN Rare Disease Advocacy Day

📍State Office Building

🕑11am - 2pm

FDA will host Rare Disease Day, a virtual public meeting, on March 1, 2024 in global observance of Rare Disease Week.

This year’s Rare Disease Day is dedicated to patients and health care professionals. Panels will discuss:

• The legal framework for approving studies and medical products at FDA

• What FDA does during review processes to approve medical products

• Decentralized clinical trials and digital health technologies

• Where to find important information and documents related to clinical trials

• Information that can be obtained from medical product labels

• Legal and ethical requirements for consent forms in clinical trials

• FDA initiatives to advance medical product development for rare diseases

• Ways for patients to engage with FDA

Continuing education credit

Free continuing education (CE) credit is available for physicians, physician assistants, pharmacists, pharmacy technicians, nurses, and certified public health professionals who attend FDA’s Rare Disease Day. This event is approved for 4.25 CE credit hours. See the Activity Outline for more information.

Public docket

Stakeholders are invited to provide their perspectives on the discussion questions through the public docket. All comments must be identified with the docket number FDA-2023-N-5211 through April 5, 2024.

Contact

Participants may submit questions in advance to OOPDOrphanEvents@fda.hhs.gov.

Office of Clinical Policy and Programs, Office of Orphan Products Development | 301-796-7634

Rare Disease Day® takes place worldwide, typically on or near the last day of February each year, to raise awareness among policymakers and the public about rare diseases and their impact on patients’ lives. Since 2011, NCATS and the NIH Clinical Center have sponsored Rare Disease Day at NIH as part of this global observance. Rare Disease Day at NIH aims to raise awareness about rare diseases, the people they affect, and NIH collaborations that address scientific challenges and advance research for new treatments.

The goals of Rare Disease Day at NIH are to:

• Demonstrate the NIH commitment to helping people with rare diseases through research.

• Highlight NIH-supported rare diseases research and the development of diagnostics and treatments.

• Initiate a mutually beneficial dialogue among the rare diseases community.

• Exchange the latest rare diseases information with stakeholders to advance research and therapeutic efforts.

• Shine a spotlight on stories told by patients living with a rare disease, their families, and their communities.

Rare Disease Day at NIH seeks to bring together a broad audience including patients, patient advocates, caregivers, health care providers, researchers, trainees, students, industry representatives, and government staff. Attendees are expected to exercise professionalism, consideration, and respect when speaking, posting, and communicating with others.

A global conversation about more than just our sickle cell! Join us to learn more about whole-person health, with Warrior Moms and Community Leaders, Biba Tinga and Rae Blaylark!

Join a forum created to support, educate & share resources with caregivers of a child/adult with sickle cell /thalassemia.

The holidays are here and we need your help! Support SickleCellMN by donating to our #HolidayHelpers Program!

Our Holiday Helpers program began in 2020 and is part of our Patient Family Assistance Program. Our annual goal is to support at least 25 FAMILIES with food, holiday gifts, and/or other concrete needs, between now and Dec. 31st.

In addition to gift cards and toys, we are raising funds to help us assist families with various concrete needs during the difficult holiday season.