Rare Disease Legislative Advocates (RDLA) staff organizes virtual meetings for rare disease advocates with their Members of Congress and/or the Member’s staff. The RDLA team also helps to prepare advocates for their meetings, providing legislative resource materials and hosting pre-meeting training webinars.

No prior advocacy experience is necessary.

Registration for this event and all RDLA events are free for rare disease advocates.

When:
February 22, 2021 - March 5, 2021

Where:
Virtual meetings with your Members of Congress and Virtual Advocacy Events

Rare Disease Legislative Advocates (RDLA) organizes meetings for rare disease advocates with their Members of Congress and/or the Member’s staff. Meetings will take place virtually on March 3 and 4, 2021. The RDLA team also helps to prepare advocates for their meetings, provides legislative resource materials, and hosts pre-meeting training webinars.

The Rare Across America training webinar will take place on February 4, 2021 at 2:00 pm ET, register here.

Special Social Media training webinar will take place on February 22, 2021.

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We are excited to present our Seventh Annual World Sickle Cell Day Event - The Role of Caregivers and the Impact of COVID-19. The importance of caregivers in ensuring the health and wellbeing of patients is critical; people with sickle cell disease depend on their spouses, family members, friends, and church and community members to help them through the tough times they face. However, caregivers also need support, so they can continue to be effective.

Further, the stress of the COVID-19 pandemic has strained the ability for caregivers to tend to their loved ones due to social distancing restrictions, rules against visitors in health care facilities, etc.

Location
Online Event

Date and Time

Friday, June 19, 2020
4:00 PM – 5:00 PM EDT

OR

Sat, June 20, 2020
1:30 AM – 2:30 AM IST

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Wednesday, May 27, 2020 from 4:00pm - 6:30pm (Pacific) 7:00pm - 9:30pm (Eastern)

Cayenne Wellness Center and Children's Foundation is hosting a conversation about Sickle Cell Disease and COVID-19 with Dr. Biree Andemariam and Dr. Charles Jonassaint. They will speak to us and update us on COVID-19 but they will also answer your questions. Please send all questions to info@cayennewellness.org.

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Register in advance for this meeting.
After registering, you will receive a confirmation email containing information about joining the meeting.
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Agenda:
- Biree Andemariam, MD, Chief Medical Officer, SCDAA will speak on COVID-19 and Sickle Cell Disease from 4:00 pm - 5:00 pm PST; 5:00 pm - 5:15 pm for Questions and Answers

- Charles Jonassaint, PhD, MHS, Assistant Professor, Department of Medicine at University of Pittsburgh School of Medicine will speak on COVID-19, Sickle Cell Disease and Mental Health from 5:15 pm - 6:15 pm PST; 6:15 pm - 6:30 pm for Questions and Answers

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Join the Global Alliance of Sickle Cell Disease Organizations (GASCDO) and global advocates on World Sickle Cell Day to learn more about the current sickle cell disease advocacy work from across the world. Panelists will be presenting from Africa, South/Latin America, Middle East, South Asia, Europe, and North America.

Purpose of webinar

• To spotlight the current state of sickle cell disease (SCD) advocacy globally and GASCDO’s role as the global SCD patient organization.
• Raise global awareness of SCD.

Save the Date:

Friday, June 19, 2020

08:00 to 10:00 AM ET

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Although we are not gathering at North Star Reach this summer, our camp-at-home program will offer our campers the same inspiring community, connectedness, and sense of belonging. As always, there is no cost to your family. If you have received a North Star Reach Summer Camp Registration Invitation Email, your child is eligible to attend our exclusive 2020 summer camp-at-home experiences.

If you know other families who are caring for a child with serious health challenge, please let them know about North Star Reach. We are welcoming new campers to participate in our ongoing “open” summer camp activities and engagement challenges.

Date:
July 21-24, 2020

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Piedmont Health Services and Sickle Cell Agency & Bridges Pointe, Inc. present night of fun and awareness.

Join us for the Sickle Social: Meet and greet, patient panel, & get a chance to hear from Sickle Cell experts about the future of Sickle Cell. Be sure to wear your red shirts and red face mask!

Date & Time:
Friday, June 19, 2020
Meet and greet: 5:45 PM
Sickle social: 6:00 PM to 7:00 PM

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Friday, June 19, 2020
1:00PM to 2:15PM EDT

Live Zoom , Fighting the Pain TV, and SCDAA MIAMI present World Sickle Cell Day with Celebrity Guest Mr. Tony Adkins, TV Host Sandy Bodeau, and Special Guest Dr. Thomas Harrington, and Dr. Ofelia Alvarez from The University of Miami and Jackson Health System Shining the Light on Sickle Cell Disease

Hosted By Naomie Pigatt and Co-Hosts

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The goal of the program is to support those individuals who are transitioning from pediatrics to adult care. It will consist of 1-on-1 phone calls and/or text messages that will focus on healthy living with sickle cell disease. The program will use the web-based Mentor1to1™ platform and PeerMentor™ smartphone app.

Mentor Eligibility:
The Peer-to-Peer Mentoring Program is currently available to anyone wanting to mentor adolescents and young adults as they seek to successfully transition into adult sickle cell health services. Sickle Cell Disease Association of America (SCDAA) is currently seeking individuals looking to support young adults with SCD as they transition into adult care.