Our Caregiver Resource page has information and resources to help and support caregivers in the SCD community. Check it out here:

Caregiver Resources

Events

March 14, 2022

All Day

GRNDaD Speaks Series: Neuropsychological Functioning in SCD: Risk and Protective Factors

Conferences Virtual

Globin Research Network for Data and Discovery (GRNDaD) hosts a monthly, virtual sickle cell disease conference for clinical and basic science leaders in SCD.

Learn more and Register: HERE

Event Details

February 22 - March 2, 2022

12:00 am

2022 Rare Disease Week on Capitol Hill

Virtual

Rare Disease Week on Capitol Hill by the EveryLife Foundation brings together rare disease community members from across the country to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators.

Learn More: HERE

Register: HERE

Event Details

February 14, 2022

All Day

GRNDaD Speaks Series: New Management Paradigm for Recurrent Ischemic Priapism

Conferences Virtual

Globin Research Network for Data and Discovery (GRNDaD) hosts a monthly, virtual sickle cell disease conference for clinical and basic science leaders in SCD.

Learn more and Register: HERE

Event Details

December 14, 2021

7:00 pm

Living SickleSMART Webinar series: Smiling Through the Pain

Webinars

This event is part of the Living Sickle Smart, a virtual education series presented by Sickle Cell Foundation of Minnesota.

This month, they’ll speak on Smiling Through The Pain: What’s in Your Toolbox? The discussion will speak with members of the sickle cell community and take a deeper dive into coping with sickle cell disease and what it takes to smile THROUGH the pain.

Learn More & Register: HERE

Event Details

December 10, 2021

11:00 am - 1:00 pm

Advancing Patient-Centered Outcomes and Impacts in Value Assessment Workshop

Webinars

PhRMA Foundation is hosting a webinar series titled “Advancing Patient-Centered Outcomes and Impacts in Value Assessment” to understand research needs to prioritize patients in comparative clinical and economic assessments.

This workshop is following 2 webinars and has the topic “Looking Forward: Opportunities Towards a Collaborative Research Agenda for Patient-Centered Evidence Generation and Broad Impact Beyond Current Models”

Learn More: HERE

Register: HERE

Event Details

November 29 - 30, 2021

All Day

IVI Annual Scientific Meeting

Conferences

This year’s Annual Scientific Meeting is going to be a hybrid event. The venue is TBD, and will largely depend on how many of our members decide to join in person versus virtual. The meeting will be held in Washington, DC.

Day One will be panel presentations with some discussion, and Day Two will be comprised largely of small group discussions with synthesis towards the end of the day.

Learn More and Register: HERE

Event Details

November 17, 2021

1:00 pm - 2:00 pm

Physical Activity and Exercise in SCD Webinar

The California Sickle Cell Data Collection program team is holding a webinar to discuss physical activity and SCD. This presentation will give a broad overview of the perceived hesitations, current data, and future direction of physical activity in sickle cell disease.

Register: HERE

Event Details

November 17 - 19, 2021

All Day

2021 PCORI Virtual Annual Meeting

Conferences Virtual

The PCORI Annual Meeting brings together members of the healthcare community, including researchers, patients, caregivers, clinicians, insurers, health system representatives, and other stakeholders. The event serves as a report to the nation on PCORI’s progress in funding initiatives to determine which care approaches work best, for whom, and under what circumstances.

Learn More: HERE

Register: HERE

Event Details

November 12, 2021

12:00 pm - 1:30 pm

Advancing Patient-Centered Outcomes and Impacts in Value Assessment Webinar #2

Webinars

PhRMA Foundation is hosting a webinar series titled “Advancing Patient-Centered Outcomes and Impacts in Value Assessment” to understand research needs to prioritize patients in comparative clinical and economic assessments.

The topic for the 2nd webinar is “Spotlight on Current and Emerging Approaches and Methods to Enhance Patient-Centricity and Inclusive Patient Engagement in Value Assessment”

Learn More: HERE

Register: HERE

Event Details

November 12, 2021

All Day

Sickle Cell Caregiver Summit

Conferences

The Sickle Cell Community Consortium (SC3) is hosting their Inaugural Caregiver Summit. There will be two days of engaging dialogue, dynamic speakers and innovative speakers from the sickle cell community. Attendees will have an opportunity to share information about how they are navigating life with their loved ones and discuss best practices for hospitalizations and times when intervention is needed.

Learn More: HERE

Register: HERE

Event Details

November 9, 2021

7:00 pm - 8:00 pm

COVID-19 Vaccine Hesitancy and Acceptance in Individuals with Sickle Cell Disease Webinar

Webinars

The National Black Nurses Association (NBNA) is gathering a diverse panel of experts to have a discussion on COVID-19 vaccine hesitancy among people living with sickle cell.

Learn More: HERE

Register: HERE

 

Event Details

November 5 - 6, 2021

All Day

Sickle Cell Disease Virtual Summit

Conferences

Join the Sickle Cell Awareness Group of Ontario’s 2021 Sickle Cell Disease Summit featuring two days of patient and caregiver panels, presentations, and Q&As with top Ontario hospitals.

Learn More and Register: HERE

Event Details

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