We take the safety and wellness of each and every participant very seriously. This year’s Walk will be a Hybrid 5k event due to the health pandemic. Join us in the park or walk wherever you want. This is also a fun way to get your family out of the house while you exercise, social distance and raise funds for a good cause.

How to Participate!

In-Person

• Join us at Franklin Park Saturday, October 1, 2022

• (Across from Shattuck Hospital) in person from 9:00 AM to 12:00 PM.

• Registration begins at 9:00 AM and the walk kicks off at 10:00 AM. At 11:00 AM we begin our program which will broadcast live via Zoom and Facebook.

Virtual

• Can’t join us in person? Then walk anywhere you wish; in your home, in your backyard, on the treadmill or in a park near you. Then join us via zoom for our program which kicks off at 11:00 AM.

Date:
Saturday, October 1, 2022

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• Event Date: Mar. 13, 2020
• Event Time: 12:00 - 1:00 p.m. ET
• Event Location: Webex

COVID-19 is causing significant concerns globally. During this webinar, the speakers will discuss the ways patient groups can assist their members and other constituents in reducing the impact of COVID-19, such as how patients with chronic diseases can avoid the illness, what to do if they feel sick, and how patient groups can prepare to field inquiries from their members.

Presenters:

• Dr. Albert Rizzo, MD, FACP, Chief Medical Officer, American Lung Association 
• Dr. Stacie Bell, PhD, Chief Scientific & Medical Officer, National  Psoriasis Foundation

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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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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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Global Blood Therapeutics (GBT) is taking proactive measures to support public health efforts and sickle cell disease (SCD) patients during the global COVID-19 pandemic.

To help stem the spread of the coronavirus, the company is backing public health strategies, including social distancing. Specifically, GBT is temporarily prohibiting all field team in-person interactions, including visits to physicians, clinics, hospitals and payers.

GBT also seeks to assure SCD patients that GBT Source, the company’s support program for those prescribed Oxbryta, remains available to help with new enrollments and reimbursement, as well as financial, co-pay, treatment adherence, and refill support.

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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