United for MDS: Together for Better Patient Outcomes
This Blood Cancer Awareness Month, the MDS Alliance is driving the conversation around myelodysplastic syndromes (MDS), a rare group of blood cancers.
In 2024, we are focusing on how MDS patient organisations can be crucial in providing essential resources and support for patients and their families. If involved early and consistently, they can play a significant role and contribute immensely to the patient journey by offering a range of benefits that address various aspects of life with MDS.
Check out our MDS Alliance members list (https://www.mds-alliance.org/member-organizations/) or seek out patient organisations from other regions closest to you to find a support group that best meets your needs. Many may be able to support with:
- Access to Information: These organisations offer useful, up-to-date information about MDS, treatment options, and advancements, equipping patients to make informed decisions about their care.
- Emotional Support: Patient organisations can help patients, and their families cope with the emotional challenges of an MDS diagnosis, by providing a community of support.
- Connectivity with Other Patients: They create opportunities for patients to connect with others facing similar situations, reducing feelings of isolation.
- Treatment Navigation Assistance: Patient organisations assist in navigating the complexities of treatment options, with added information and explanations, helping patients better understand their choices and potential outcomes.
- Family and Caregiver Support: They provide families with counselling services, educational materials and advocacy support, helping them understand and manage the impact of MDS on the patients they support and care for.
- Clinical Trials Access and Information: Patients may gain access to clinical trials and new treatments with the help of patient organisations, offering potential new options for care that might not be available via standard treatments.
- Legal and Employment Advice: They can provide legal and employment advice to help patients figure out workplace accommodations, insurance claims, and disability rights, ensuring they are supported in the various aspects of life.
- Long-term Survivorship Planning: Patient organisations assist with long-term survivorship planning, with resources and support for ongoing health monitoring, coping strategies, lifestyle adjustments, and post-treatment phases.
- Advocacy: By advocating for patients’ needs, these organisations ensure that patients have access to better care and support systems, that may address any shortfalls that exist in their areas.
Addressing the challenges faced by those with MDS takes a team of healthcare experts and dedicated supporters committed to better patient experience and outcomes.
Don’t just #ThinkMDS. Stand United for MDS.
Our month-long campaign #United4MDS will each week include a mix of:
- Informational content highlighting helpful facts and resources for MDS patients.
- Healthcare professionals sharing their key views about MDS patients and patient organisations.
- MDS patient sharing their eye-opening experiences facing the day-to-day challenges of their conditions.
The hashtags will include #United4MDS #ThinkMDS #ThisIsBloodCancer
1- Download the briefing guide
Download the Blood Cancer Awareness Month briefing guide below to understand how you can get involved and support the campaign.
2- Share our Social Media graphics!
- Like and share the social media posts on your social channels with the hashtag #United4MDS, #ThinkMDS, #ThisIsBloodCancer and don’t forget to tag @MDSAlliance
- Customise the Poster Template to feature information about your organisation and the services and resources you offer: Download
3- Need to add your own message or logo?
- Now you can customise these graphics with editable file options.
- Using the Canva board – https://www.canva.com/
- How-to guide to update the Canva designs – Download
For global MDS support information and MDS Alliance member group resources and materials, please go to our resources page.