Helpful Links

Here are some valuable resources for LVAD patients and caretakers:

Non-Profit Resources

Here is a list of nonprofit organizations that provide resources and assistance to LVAD (Left Ventricular Assist Device) patients and caretakers:

  • MyLVAD: A comprehensive community offering resources, educational materials, and support for individuals living with LVADs.
  • HeartBrothers Foundation: Dedicated to supporting heart failure patients and their families, including those with LVADs, by providing resources, housing assistance, and peer support.
  • Patient Advocate Foundation: Offers a National Financial Resource Directory to help patients, including those with LVADs, find financial assistance programs and resources.
  • HealthWell Foundation: Provides financial assistance to underinsured patients, helping with prescription copays, health insurance premiums, and other out-of-pocket healthcare costs.
  • NeedyMeds: A national nonprofit that provides information on healthcare programs, offering direct assistance and facilitating programs to help patients afford medications and healthcare costs.
  • Patient Access Network (PAN) Foundation: Offers financial assistance to underinsured patients to help cover out-of-pocket expenses for prescribed medications.
  • Health Navigator Foundation: Provides navigation services for heart transplant and LVAD patients, assisting them in managing their healthcare journey.

These organizations offer various forms of assistance, including educational resources, financial aid, and patient advocacy, to support LVAD patients and their families.

Housing

Several nonprofit organizations in New England provide housing and support services to families of hospital patients. Here are some notable options:

  • Hospitality Homes – Boston, MA – Connects patients and their caregivers with host homes and donated apartments during medical treatment in Boston. 
  • The Neely House – Boston, MA – Located within Tufts Medical Center, offering bed-and-breakfast style accommodations for cancer patients and their families. 
  • Boston Children’s Hospital Patient & Family Housing Program – Boston, MA – Provides affordable accommodations for families of patients receiving treatment at Boston Children’s Hospital. 
  • Boston Hope Lodge – Boston, MA – Operated by the American Cancer Society, offering free lodging for cancer patients and their families. 
  • Living Well at Home – Boston, MA – Assists patients in finding and maintaining stable housing, emphasizing the importance of safe and affordable housing for health. 
  • Boston Health Care for the Homeless Program – Boston, MA – Provides medical respite care and housing support for homeless individuals, including those discharged from hospitals. 
  • Tommy’s Place – Falmouth, MA – A vacation home on Cape Cod for children fighting cancer and their families, offering a respite

These organizations offer a range of services, from temporary lodging to long-term housing assistance, to support families during medical treatments.

Support Groups (not an exhaustive list)

  • MyLVAD Community
    • Location: Online Community
    • Details: A virtual platform with over 23,000 members, including LVAD recipients, caregivers, and medical professionals. It offers online support groups, forums, and resources for those living with LVADs.
  • LVAD Support Group – Positive People Helping LVAD Patients
    • Location: Online Community
    • Details: A Facebook group dedicated to supporting LVAD patients, their families, and friends, providing a space for sharing experiences and information.
  • The DCM Foundation – LVAD Support Group
    • Location: Online Community
    • Details: Provides resources and support for individuals with Dilated Cardiomyopathy (DCM) and those with LVADs, including online support groups and resource links.
  • The HeartBrothers Foundation
    • Location: Online Community
    • Details: A nonprofit organization dedicated to supporting heart failure patients and their families, offering resources, education, and community connections.

Social Media Groups

  • Facebook – Left Ventricle Assist Device (LVAD) Support©: A public Facebook group since 2013 to provide information relevant to both the LVAD Patient and Caregiver, to provide assistance and confidence to Caregivers and patients alike.
  • Facebook – Living Your Best LVAD Life: This Group Is Designed To Provide Support, Encouragement, Love, Praise, Recognition And Celebration For LVAD Patients, Caregivers, Family Of LVAD Patients, And Heart Transplanted Patients. Living Your Best LVAD Life Is A Support Group. Living Day To Day Is Hard, We Go Through All Types Of Emotions, But When We Have A Good Day We Need Love, Smiles, Encouragement And Celebration. Choose To Join Us, We Would Love To Be Here For You.
  • Facebook – LVAD support group positive people helping LVAD patients, family, friends .: Hoping to help patients, family, and friends that are with LVAD questions or concerns. Looking to spread positive support to all. Making people aware of what us as patients and care takers go through. Understanding the new life and hope there is through this device. I’ve been given a new perspective of life.
  • Facebook – LVAD Friends: Where LVAD Patients and their Families can meet for Support and Friendship.
  • Facebook – LVAD Caregivers Support Group: A place to vent or ask questions! Every caregiver needs someone to vent to. Where better to do this than a group of fellow caregivers! We can relate to each others ups and downs!
  • Facebook – LVAD Dating & Beyond: This is a group for people to connect during and after their LVAD experience.
  • Facebook – LVAD Conversations: It is our intention to bring people and information together to share tips & tricks, research, inspirational stories, clothing options, and other topics of interest for living well with an LVAD.