Sick Cells and Avalere Health want to thank our Dialogue attendees for sharing so many interesting ideas which helped us create a Roadmap on how to advance care for individuals with SCD.

Read the Roadmap

Events

July 10, 2021

9:00 am - 11:00 am

SCDAA’s 8th Annual Walk With the Stars (virtual)

SCD Walk/Event

This year’s Walk with the Stars will be held virtually, so walk, run or dance where you are to support SCDAA and celebrate your steps with them on July 10! Prizes will be available for top individuals and teams.

Learn more about the event and registration here.

Event Details

May 22, 2021

All Day

Rare on the Road 2021- In-Person Training and Networking | Chicago, IL

SCD Conferences

Global Genes and the EveryLife Foundation have partnered to host RARE on the Road events around the country, developing the next generation of advocacy leaders.

With feedback from the community, RARE on the Road 2021 will include one interactive webinar and three in-person meetings. While all parts of this event are geared toward empowering advocates to build their skill set, enhance their knowledge, engage in advocacy, and network with their local rare disease community, in-person events will focus on state-specific information based on their location.

Event Details

May 15, 2021

All Day

Rare on the Road 2021- In-Person Training and Networking | Miami, FL

SCD Conferences

Global Genes and the EveryLife Foundation have partnered to host RARE on the Road events around the country, developing the next generation of advocacy leaders.

With feedback from the community, RARE on the Road 2021 will include one interactive webinar and three in-person meetings. While all parts of this event are geared toward empowering advocates to build their skill set, enhance their knowledge, engage in advocacy, and network with their local rare disease community, in-person events will focus on state-specific information based on their location.

Event Details

May 11 - 14, 2021

All Day

ASGCT 24th Annual Meeting

SCD Conferences

The American Society of Gene and Cell Therapy’s (ASGCT) Annual Meeting will once again be virtual in 2021, and registration is now open! View the program here.

There are two ways you can register, depending on the size of your group. See the Registration page for information on meeting rates.

Individual registration: This option is meant for ASGCT Members and nonmembers.

Group registration: This option is meant for more than five registrants from the same institution. Groups will receive a 10% discount on registration.

Event Details

May 10, 2021

All Day

ASGCT Pre-Meeting Workshop

SCD Conferences

The American Society of Gene and Cell Therapy’s (ASGCT) Pre-Meeting Workshop has separate registration than the Annual meeting.

For individuals with genetic disorders, their families, and other advocates, this workshop will address topics such as the clinical trials process; the role of patient advocates in fostering gene therapy research; the development of effective partnerships; and challenges and opportunities in gene therapy development.

Event Details

May 1, 2021

All Day

Rare on the Road 2021- In-Person Training and Networking | Las Vegas, NV

SCD Conferences

Global Genes and the EveryLife Foundation have partnered to host RARE on the Road events around the country, developing the next generation of advocacy leaders.

With feedback from the community, RARE on the Road 2021 will include one interactive webinar and three in-person meetings. While all parts of this event are geared toward empowering advocates to build their skill set, enhance their knowledge, engage in advocacy, and network with their local rare disease community, in-person events will focus on state-specific information based on their location.

Event Details

April 23, 2021

9:00 am - 3:00 pm

Texas DUR Meeting: Review of SCD Treatments

DUR Meetings

The Drug Utilization Review Board will be meeting to discuss many topics, sickle cell disease treatments are included.

Event Details

March 24, 2021

All Day

Sick Cells Virtual Hill Day

Ambassador Program Sick Cells' Event

On March 24th, Sick Cells will be hosting a Virtual Hill Day as part of our annual Ambassador Policy Forum. Ambassadors trained on March 23rd will use their new skills to meet with their legislators, advocate for SCD, and request robust funding for SCD at the federal level.

If you are interested in scheduling a Hill Day meeting or learning more about the Ambassador Program, please contact Emma Andelson and eandelson@sickcells.org

Event Details

March 23, 2021

6:30 pm - 7:30 pm

Help Yourself to Health Reading Club: A Sick Life by Tionne “T-Boz” Watkins of TLC

Other Community Event SCD Walk/Event

Join Georgia’s Clayton Public Library Help Yourself to Health Reading Club for a discussion of “A Sick Life- TLC ‘n Me: Stories from On and Off the Stage.”

A Sick Life chronicles Tionne “T-Boz” Watkins’ struggles with Sickle Cell Disease from childhood to adulthood and her journey from a sickly young girl from Des Moines who was told she wouldn’t live to see 30, to the superstar musician and sickle-cell disease advocate she is today.

Event Details

March 23, 2021

11:00 am - 1:30 pm

Rare on the Road 2021- A Rare Disease Leadership Interactive Webinar

SCD Conferences

Global Genes and the EveryLife Foundation have partnered to host RARE on the Road events around the country, developing the next generation of advocacy leaders.

With feedback from the community, RARE on the Road 2021 will include one interactive webinar and three in-person meetings. While all parts of this event are geared toward empowering advocates to build their skill set, enhance their knowledge, engage in advocacy, and network with their local rare disease community, in-person events will focus on state-specific information based on their location.

Event Details

March 23, 2021

11:00 am - 2:00 pm

Ambassador Policy Forum

Ambassador Program Sick Cells' Event

This virtual meeting will be a concentrated learning and skill-building workshop for the Sick Cells Ambassadors. We will focus on developing skills related to advocacy, policy and legislation, and working with legislators. The workshop will feature educational presentations, special guest presentations, and dedicated work time with the intention of producing a toolkit of resources for Ambassadors and other sickle cell advocates to use in 2021 and after.

This 3-hour event will feature two guest speakers: one will speak about local advocacy and one will speak on federal advocacy. This is a closed event and is only open to Sick Cells Ambassadors. Agenda & platform to be announced.

Event Details

March 12 - 14, 2021

All Day

Camp Next Level

SCD Walk/Event

Hosted by The Sickle Cell Association of Texas Marc Thomas Foundation, Camp Next Level is a three-night, four-day intense transitional program for teens ages 15-19 with sickle cell disease. This event seeks to address the host of issues and concerns that come from underprepared transitions from pediatric to adult services.

This event will be fully virtual this year.

Learn more: HERE

Register: HERE

Event Details

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