The Waldenstrom's Weekly

June 23, 2023

Volume 3, Issue 22

"I am so very grateful that this fantastic resource exists. It’s truly wonderful to have company when one is on a less common Journey." -S.K.

-Research -

New Modernized ClinicalTrials.gov Website

From the U.S. Food & Drug Administration:

The National Library of Medicine (NLM) has launched the modernized ClinicalTrials.gov website, which is the result of a multi-year effort to deliver an improved user experience on an updated platform that will accommodate growth and enhance efficiency.

Informed by user feedback, ClinicalTrials.gov includes an updated look and feel that improves functionality for searching, viewing, and downloading information about clinical trials. The new look includes simple web components that improve navigation and make important information easier to find. 

To allow users to adapt to the modernized site, the former ClinicalTrials.gov website will remain available under  https://classic.clinicaltrials.gov/ until it is retired in 2024. NLM will keep users informed before retiring the classic site. 

-Education -

Video Available! Kicking the Tires on Clinical Trials: Important Questions to Ask and Things to Consider Before Enrolling in a Clinical Trial

This week, IWMF Support Group and International Affiliate Leaders from across the globe met to discuss the important topic of Kicking the Tires on Clinical Trials: Important Questions to Ask and Things to Consider Before Enrolling in a Clinical Trial.

Join panelists Bill Block, Marcia Klepac, Ron Ternoway and Lisa Wise, who share their top key questions to ask and things to consider before enrolling in a clinical trial. This discussion offers unique insights from fellow WM community members who have ALL been "research subjects". Check out the informative recording and question list below!

TODAY! Sound Meditation for WM

2:00PM U.S. Eastern Time

Enjoy this free monthly offering today! Relax to the sound of Ann'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. 

Contact mpostek@iwmf.com for the Zoom link!

WM Community Corner

Last Saturday, the Waldenström Finland Ry group held their annual patient meeting in the city of Tampere. This meeting was led by Juha Wirekoski with around 30 attendees, including patients and their partners. Hannah Syed (IWMF Manager, Affiliate & Global Partner Engagement) was able to attend this fantastic meeting, where WM patients had a rare opportunity to meet face to face, support each other, and discuss their issues and visions for the future. The day also included a presentation from the Cancer Society of Finland and ended with a great social outing to the theatre. 

Wheels for Waldenstrom's is an event to raise funds for WMUK, the only United Kingdom charity for WM. The bike ride on August 25-27th will feature WM patients and their physicians riding side by side from London (UK) to Paris (France), as well as WM supporters who wish to participate. Beth Mitchell, IWMF Manager, Affiliate & Global Partner Engagement, will be taking part in the BIG event!

The IWMF website calendar is updated regularly with upcoming IWMF Support & Specialty Topic Groups, International Affiliate Meetings, and IWMF Partner Meetings. Check out what's on the horizon HERE!

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 info@IWMF.com or visit www.IWMF.com