Finding Comfort in Community: 20+ Support Groups that Help Patients and Families
If you or a loved one are living with a serious illness, you may have experienced feeling overwhelmed or isolated by all of the bumps in the road. Just know that while you may feel alone at times (even in the company of your loved ones), you’re not. There are lots of other people going through similar experiences and feeling the same way.
That’s why many disease-specific organizations offer support groups, to help people to connect, share what’s going on, and find comfort in the community. (You never know who you are going to meet! You may just meet a friend you’ll stay in touch with for years to come.)
Whether you’re newly diagnosed, going through treatment, or supporting a loved one, support groups are key. Speaking with others who understand what you’re going through can make a big difference in how you’re feeling emotionally.
These Organizations Offer Support Groups for People with Serious Illness and Their Loved Ones
While there are many nonprofit organizations that offer support to people with serious illness, we’ve rounded up over twenty below, which welcome people facing many different types of serious illness, and their loved ones.
- Asociación de Alzheimer provides support groups for people living with dementia and their caregivers—available in person and online; they also host an active online community/message boards, ALZConnected, where you can ask questions, get advice, and find support
- Sociedad Americana del Cáncer hosts a peer support online community for cancer patients, survivors, caregivers, families, and friends
- Asociación Americana del Corazón offers online support groups for people experiencing stroke, arrhythmia, and other heart conditions
- Asociación Americana del Pulmón offers people with lung disease, and their loved ones, in-person support groups, online communities, and more
- American Parkinson Disease Association hosts over 1,100 support groups throughout the U.S. where people living with Parkinson’s Disease, and their families, can connect with others
- ALS Association offers people living with ALS, and their loved ones, with nationwide and local support groups, in addition to many other resources
- American Partnership for Eosinophilic Disorders (APFED) offers online community and support groups for people living with eosinophilic disorders, and their loved ones
- Cancer Support Community / Gilda’s Club offers in-person and virtual groups for people living with cancer and their loved ones
- Red de padres valientes supports parents and other caregivers of children with serious illness with tools, resources, and community
- Vivir más allá del cáncer de mama offers a community of support—from private online support groups to volunteer opportunities to DIY fundraising and more—to help everyone affected by breast cancer get through it, together
- Sociedad Nacional de Esclerosis Múltiple offers a patient and family website where people can connect with others via an online or in-person community, access resources, find educational programs, and more
- Fundación Nacional del Riñón offers peer mentoring, online communities, a helpline, educational resources, and more, for people living with kidney disease, and their caregivers
- Red de acción contra el cáncer de páncreas offers people living with pancreatic cancer, and their families, in-person and online support groups
- Fundación Parkinson offers people living with Parkinson’s Disease various resources and support, including an online community and local chapters for in-person support, and more
- Cáncer estúpido aims to empower everyone affected by adolescent and young adult (AYA) cancer by ending isolation and building community; they offer age-appropriate resources to help navigate treatment and survivorship
- COMPARTIR Apoyo contra el cáncer offers a full range of support services for breast, ovarian, uterine, cervical, and metastatic breast cancer
- U.S. Pain Foundation offers peer-led virtual groups and education for people living with chronic pain
- Coalición de Supervivencia de Jóvenes offers many opportunities for young breast cancer survivors to connect, both online and in person
Though the above resources are for patients and caregivers, we’ve separated dedicated caregiving support groups below.
- AARP Family Caregiving offers a private Facebook group, where caregivers can connect, share practical tips, offer support, and more
- Red de acción de cuidadores offers a private Facebook group for caregivers of all backgrounds peer support, and other resources for people across the country
- CaringKind provides caregivers with the opportunity to discuss the challenges of caring for a family member with Alzheimer’s disease and related dementias with multiple support groups, that are offered virtually and in-person
- Alianza de cuidadores familiares offers various online and in-person support groups, in addition to other resources to locate programs and services in their area
- SmartPatients offers over 100 online communities where patients and caregivers can connect and learn from others living with similar serious illnesses
- WellSpouse Association offers support for spouses and partners of people who are chronically ill or disabled, through online and in-person support groups, 24-7 online support, events, and more
Talk to Your Palliative Care Team
Si ya estás recibiendo Cuidados paliativos y feel like you could use some extra support, talk to your care team. It’s important for them to know this so they can provide the most robust care possible. Also, they may know of different support groups or events in the local community. If you are not receiving palliative care, speak to your doctor (e.g., oncólogo) or medical team. They can refer you so you can get an extra layer of support.
¿Qué son los cuidados paliativos?
Cuidados paliativos es specialized medical care for people living with a serious illness. This type of care is focused on relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a specially trained team of doctors, nurses, trabajadores sociales, capellanes, and other specialists who work together with your other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided alongside curative treatments.
To learn more about palliative care and how it can help, explore more of ObtengaCuidadosPaliativos.orgEncontrará recursos útiles, incluido un Test rápido para ver si los cuidados paliativos podrían ser adecuados para usted o su ser querido.
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