Myeloma Organizations you Shouldn't Miss!
If you’re newly diagnosed or have been looking for a place to get some insights, we’ve got a few thoughts for you. Below is a list of our friends and the work they’re doing, follow them to learn more!
Myeloma Crowd
- Provides:
- Patient Education
- Research driven by patient needs
- Data solutions
Founded in 2010 by Myeloma patient Jenny Ahlstrom and her husband Paul. Jenny noticed that adult clinical trials for cancer had only 3-5% participation rates and many research projects weren’t completed because scientists simply couldn’t find enough willing participants with rare cancers.
Joining forces with her husband Paul, Jenny founded Myeloma Crowd to empower patients and accelerate cures.
Myeloma UK
Provides:
- Educational resources for HCPs
- Research investment
- Patient support and advocacy
- Patient education
Myeloma UK is run by Rosemarie Finley, a registered nurse who previously worked at the Epilepsy Society. Myeloma UK is the only organization in the UK focusing solely on myeloma and the 5,500 patients newly diagnosed with myeloma every year in the UK.
International Myeloma Foundation
Provides:
- Research
- Education
- Patient support
- Patient Advocacy
Founded in 1990, the organization is the first and largest myeloma-specific charity in the world with over 350K members in 140 countries. Patients, care partners and medical professionals can all find valuable resources here.
The Myeloma Beacon
Provides:
- Myeloma news
- Patient resources
- Patient forum
Since 2008 the Myeloma Beacon has been providing news and support to the multiple myeloma community with a mix of educational and opinion pieces.
Cancer Patient Communities with Myeloma Forums
Patient Power
Inspire
Smart Patients
Patient Empowerment Network
Check out these organizations for more resources and to connect with others.