Through its Centers of Excellence program, the MDS Foundation helps patients get appointments with leading experts from around the world.
For patients with cancer there is no time to waste. The MDS Foundation understands this urgency and makes access to cancer care its top priority.
The foundation, located in Yardville, New Jersey, was established in 1994 and to this day remains the only international nonprofit organization solely dedicated to helping patients with myelodysplastic syndromes (MDS).
MDS are conditions that can occur when the blood-forming cells in the bone marrow are damaged. Considered a rare disease, there are an estimated 87,000 worldwide diagnoses each year. MDS is more commonly seen in older men (65 years and older). However, it can also affect women, younger people and children.
The MDS Foundation prides itself on its MDS Centers of Excellence program, which is made up of leading experts from around the world who have made MDS their focus. There are 179 centers of excellence — 69 in the United States and 110 outside of the country — representing 35 countries that have been approved to be part of this program. Hematologists are vetted by the foundation’s Board of Directors.
“When a doctor and their institution receives that designation as a center of excellence from us, they agree to provide a preferential appointment,” Audrey Hassan, patient liaison, told CURE in an interview. “They will never make anyone wait. I can usually get a patient in within days.”
For the past 16 years, Hassan has spent countless hours counseling both patients and caregivers as they try to cope with the disease. She answers phone calls, emails and message board inquiries daily to make sure that those who seek help get access to the resources they need.
“Although I’m not a healthcare practitioner, I have been here for so long that I am very well informed and can provide answers to questions,” she said. “And, if I can’t, I reach out to our Board who can answer them.”
Another way in which patients can learn more about MDS and gain community support is through the MDS Foundation’s patient and caregiver forums. The free of charge, one-day forums are planned annually for patients with MDS and their families in the U.S. and Europe. Ten are held in the U.S. each year with different guest speakers. In 2018, they will be making stops in La Jolla, California; Albuquerque, New Mexico; Pittsburgh; Salt Lake City; Hackensack, New Jersey; Baltimore; Minneapolis; Charlottesville, Virginia; Cincinnati; and Miami. A global patient forum will be held in Stockholm, Sweden on June 13, 2018.
“When patients reach out, I let them know right away that they are not alone,” Hassan said. “I can even connect them with a peer who has a similar subtype.”
The MDS Foundation also offers patients information about treatment options, clinical trials and financial assistance. In addition, its Building Blocks of Hope program serves as an educational resource that offers strategies for patients living with MDS and their caregivers.
“When I started with the foundation 16 years ago there were no treatments approved for the treatment of MDS so, in the very beginning, all I had to offer patients were either blood transfusions or growth factors,” Hassan said. “And then, years later, it was such an exciting time because there was more hope after the Food and Drug Administration approved treatments.”
Two exciting projects in the works for the foundation in the new year include an “Animated MDS Patient Video” and the “Global Pediatric MDS Program.”
The Animated MDS Patient Video will be made up of patient-friendly learning tools that are aimed at overcoming barriers to health literacy, helping vulnerable populations and addressing poor medical understanding. It will feature animations, infographics and knowledge tests. This is set to launch midyear 2018.
The Global Pediatric MDS Program is focused on bridging the communication gap between pediatric families affected by MDS and physicians. Upon diagnosis, families may turn to the internet for more information but they may not understand all the medical terms. This program will bring the communities together and introduce collaborative decision-making.
“There is never a good time to get MDS, but now there are many drugs in the pipeline, clinical trials and more resources. I really feel that there is hope,” Hassan said.