The Waldenstrom's Weekly
February 24, 2023
Volume 3, Issue 7
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Stay Safe, Stay Healthy, Stay Waldenstrong! |
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Rare Disease Day is on February 28th! |
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February 28th has grown into an essential annual celebration to engage the community, elevate the stories of patients and families, drive donations, and advance critical resources and innovative research for rare diseases such as WM.
Learn more about Rare Disease Day in Europe here and in the US here.
Feel free to share your story and your celebration of Rare Disease Day on your own social media accounts and on the IWMF's email discussion group and private Facebook group using the tools provided in the links above, and consider showing your appreciation in a special way by honoring your favorite WM patient or caregiver with a donation to the IWMF in their honor here .
Survey Opportunity: Make YOUR voice heard! The Rare Disease Diversity Survey is an unprecedented joint venture by the Rare Disease Diversity Coalition (RDDC) and The National Organization for Rare Disorders (NORD) to identify barriers faced by rare disease patients and their families and to help amplify diverse and marginalized perspectives in rare disease advocacy and research. Help support these critical efforts by taking the survey today and encouraging others to do the same! Take the survey HERE.
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REGISTER TODAY FOR THE IWMF ED FORUM |
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RAFFLE WINNERS
IWMF Shop Swag Winners
- Eunice Q. (WI)
- Lisa W. (PA)
- Lawrence F. (NJ)
2024 Ed Forum complimentary registration
While you are at it, be sure to peruse the fabulous St. Louis Gateway Guide, which was created by our incredible Ed Forum Committee volunteers!
Although you can attend virtually, the Ed Forum is a unique opportunity to meet, IN PERSON, world-renowned WM clinicians and researchers and spend time with fellow patients and caregivers who are also experiencing the WM journey.
Please Note: Advance verification of COVID-19 vaccination will be required for all in-person attendees for their own safety, as well as the safety of others. In-person registered attendees will receive additional details on Ed Forum health and safety protocols. Be sure to consult with your healthcare team when deciding to attend physically. Your health is our priority. Masking is strongly recommended (but not required) for in-person attendees.
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HealthWell Foundation Reopens WM Fund |
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The HealthWell Foundation® has reopened their fund to provide financial assistance to patients living with WM.
Through the fund, HealthWell will provide up to $8,000 in copayment or insurance premium assistance to eligible patients with annual household incomes up to 500 percent of the federal poverty level to obtain prescription medications for the treatment and management of their condition. Please note that funding is limited and grants are awarded on a first-come, first-served basis for eligible patients.
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Recording Available: Sound Meditation for WM |
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Relax to the sound of Ann Grace's authentic Himalayan Singing bowls, with gentle verbal guidance to further calm the nervous system. According to sound healing traditions that have been passed down through both lineage and training, these bowls introduce a healing harmonic sound wave that helps dislodge stagnation on the cellular level, bringing the mind and body into perfect tune.
Check out the recording HERE.
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International Young WM Support Group Meeting
Monday, March 13th at 7:30PM U.S. Eastern Time
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The International Young WM Support Group will be having a meeting next week for patients and caregivers under the age of 50. Attendees will join Co-Leaders Ryan and Deborah on Zoom for a caring and sharing session, which will last approximately one hour.
Monday, March 13th, 2023
7:30PM - 8:30PM U.S. ET
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The information about this clinical trial is intended to be helpful and educational, but it does not constitute an endorsement by the IWMF and is not meant to be a substitute for professional medical advice. The IWMF strongly encourages discussions with their health care professionals about specific medical conditions, side effects, and treatments.
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IWMF is dedicated to supporting and educating everyone affected by WM to improve patient outcomes while advancing the search for a cure. Waldenstrom's Weekly is a free service to WM community members to share WM related news and events. Click on downloading photos at the top to view all content. For more information, email [email protected] or visit www.IWMF.com
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IWMF, 6144 Clark Center Ave., Sarasota, FL 34238 | [email protected] | 1-941-927-4963 |
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