Myelodysplastic Syndromes

People affected by a cancer internationally; programs and services offered to patients and caregivers residing in the United States

In the U.S., ACS is a community-based voluntary health organization dedicated to eliminating cancer as a major health problem.

• Provides educational materials both online and in print about cancer, including blood cancers, as well as related information on topics such as diet, exercise, complementary and alternative medicine, and disease statistics
• Offers support services via online discussion boards and in-person support groups through local chapters
• Cancer Survivors NetworkSM, a global online community, transcends geographic boundaries and builds bonds among cancer survivors and caregivers through shared experiences and feelings
• Road to Recovery, a program offered locally by some chapters, has volunteer drivers who transport patients to and from treatment appointments
• Hope Lodges are temporary housing accommodations for patients traveling far from home for treatment. There are more than 30 lodges.

Patients and families living with Aplastic Anemia, Myelodysplastic Syndromes (MDS), Paroxysmal Nocturnal Hemoglobinuria (PNH), and related bone marrow failure diseases

To support, connect and educate patients, caregivers and health professionals on bone marrow failure diseases worldwide

• Free educational materials: Information on research, treatment, and clinical trials
• Online Academy: Live webinars, webcasts, interviews with experts, and interactive learning modules
• Peer Support Network: Patients and caregivers can speak with trained patient volunteers who share treatment experiences and provide emotional support
• Community Connections: Volunteer-led regional support groups connecting patient and families
• Educational Conferences: Our free conferences in cities around the country offer learning opportunities from leading medical experts, and the ability to connect directly with other patients and caregivers
• Find A Specialist: online search tool.
   

Patients, caregivers, and healthcare professionals

To empower patients each step of their disease journey from diagnosis, through education, care and on to a cure.

• Provides integrated software platforms to help blood cancer patients and their caregivers learn more and better navigate their disease. 
• Website provides tools to find a specialist, find solutions for side effect, search for clinical trials and treatment options.
• You can also listen to disease podcasts, join community forums, join a fitness challenge, and learn from experts in HealthTree University
   

Cancer patients, caregivers, family, friends, healthcare providers, researchers

To provide accurate, up-to-date, and reliable information on cancer that is easy to understand; this free service is a federally funded cancer education program.

• Offers trained information specialists who can answer cancer-related questions on a range of cancer topics (but is not a substitute for medical advice).

Patients in the U.S. with rare diseases

NORD is leading the fight to improve the lives of rare disease patients and families. We do this by supporting the rare community – its people and organizations – and by working together to accelerate research, raise awareness, provide direct assistance and drive public policy.

• Administers Patient Assistance Programs to help patients obtain life-saving or life-sustaining medication they could not otherwise afford
• The Patient Information Center provides information on thousands of rare disorders and resources
• The Rare Caregiver Respite Program offers limited financial assistance to eligible caregivers so that they can take a break from caregiver responsibilities
• Hosts regional and national meetings for patients and families
• Works collaboratively with a growing roster of member organizations.

Patients, caregivers, families, and healthcare professionals impacted by cancer

To support patients, caregivers, and healthcare providers by providing up-to-date, evidence-based cancer education that addresses needs from risk assessment through diagnosis, treatment, and survivorship

• Provides online educational materials in English and Spanish on all cancer types, including blood cancers, as well as related information on topics such as risk and prevention, treatment, and support.
• Offers survivorship care plans and survivorship clinic listing.
• Offers resources for healthcare professionals, including patient education materials and professional education.
   

Patients with MDS, caregivers, health professionals worldwide

A multi-disciplinary, international organization devoted to MDS support, research, treatment, and education for patients, caregivers, physicians, nurses and other health care providers. The organization is based upon the premise that international cooperation will accelerate the process leading to the control and cure of these diseases.

• Provides disease information, insurance information and publications

• Offers patient advocacy groups, research funding, and professional educational initiatives

• Referrals to MDS Centers of Excellence and clinical trials

• Conducts international symposia.