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Events

July 10, 2021

9:00 am - 11:00 am

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

Walks and Events

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

June 26 - 27, 2021

All Day

2021 Living Rare, Living Stronger NORD Patient and Family Forum

Conferences

The Living Rare, Living Stronger NORD Patient and Family Forum featuring the Rare Impact Awards will be a patient-centric event. This event will include live educational sessions, interactive Q&A, wellness workshops and inspiring online panels presented by patients, caregivers and top rare disease medical experts – all from the comfort of your own home.

The Living Rare, Living Stronger agenda includes sessions in which patients and their families can gain insight and practical tools for living their best lives with rare diseases, covering topics for newly diagnosed patients, undiagnosed, and long-term patients and caregivers.

Learn More: Here

Register: Here

Event Details

June 17, 2021

11:00 am - 3:00 pm

Missouri P&T Meeting

P&T Meetings
Event Details

June 14 - 17, 2021

All Day

AcademyHealth Annual Research Meeting

Conferences

Health services researchers, policy analysts, clinicians and community members using evidence and data to transform health and health care will once again convene virtually for the AcademyHealth Annual Research Meeting (ARM).

An important annual milestone for the community, the ARM is AcademyHealth’s biggest and most popular meeting of the year, offering an irreplaceable forum for connection, recognition, reflection, learning and professional networking opportunities.

Learn More: HERE

Register: HERE

Event Details

May 29, 2021

12:00 pm - 4:00 pm

Sickle Cell Mental Health Virtual Conference

Conferences

Hosted by the Sickle Cell Association of Texas Marc Thomas Foundation, this conference in honor of Mental Health Awareness Month will discuss topics such as depression, caring for the caregiver, hospital-related trauma, and more.

Learn more: HERE

Register: HERE

Event Details

May 22, 2021

All Day

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

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 21, 2021

12:00 pm - 1:30 pm

Strategic Fundraising: Fundamentals and Frameworks Webinar #2

Webinars

For community based organizations (CBOs), This interactive educational webinar, brought to you by Global Blood Therapeutics Inc. (GBT), aims to inform CBOs on the art and science of fundraising, including an overview of fundraising trends and tips on implementing strategies to increase attractiveness to potential funding sources.

Learn More: HERE

Register: HERE

Event Details

May 19, 2021

10:00 am - 4:00 pm

Roland B. Scott Memorial Symposium: Glimmers of Hope for SCD

Conferences

Hosted by Howard University, this virtual event will speak about new treatments for sickle cell disease and host panel discussions on stigma, sexuality, aging, and insurance.

Learn More: HERE

Register: HERE

Event Details

May 15, 2021

All Day

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

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 13, 2021

4:00 pm - 6:00 pm

Research!America 2021 Advocacy Awards

Conferences

Join the 25th anniversary of the Research!America Advocacy Awards, recognizing individuals and organizations whose commitment to science, technology, and public health has contributed to societal progress in profoundly important ways. The 2021 event, presented virtually, will feature a mix of interviews, fireside chats, and Q&A sessions to introduce and honor the 2020 and 2021 Awardees.

Learn More: HERE

Register: HERE

Event Details

May 11 - 14, 2021

All Day

ASGCT 24th Annual Meeting

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

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

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