Patient Advocacy Groups: How Can They Help?

In several of our posts, the importance of support throughout one’s cancer journey has been discussed. Eve Mart has discussed how she received support from friends and family following her diagnosis of breast cancer, as well as her experience providing support to others. We’ve also offered thoughts from a healthcare provider’s perspective, as Deepti Babu wrote about here. I want to continue that trend by discussing how you may be able to receive and/or provide support through patient advocacy organizations.  

Choosing an advocacy organization – One important thing to note is that there are a lot of different organizations out there. Many of them have the common goal of providing support; however, they are all slightly different. I don’t want to give the impression that you need to choose a certain group over another, or only be involved with one group; rather, I want to suggest some ways to sort through the thousands of different options that will appear if you do a Google search for “breast cancer support”:

  • Ask your healthcare providers for suggestions: Since they know your situation, they may be able to suggest a group that may be helpful for you.
  • Read mission statements: Look for or ask about the goal and mission of the group (such as which type of people the group was designed to help and how can they help). As an example, here is the mission statement for Facing Our Risk of Cancer Empowered (FORCE). You can find these by exploring the websites of most organizations.
  • Make sure they offer the type of support you are looking for: Some groups may only provide support through education, while others may offer funding support or emotional support, etc. The possibilities are nearly endless here, so don’t be afraid to ask someone who is part of the organization how they can help.
  • Make sure the group is in your area: Some organizations are national, while others are regional or local. Check to make sure that the group you are looking into is a resource that is readily available to you.

Asking for help – Patient advocacy groups can provide various types of support; however, you often need to actively seek out the help, but you shouldn’t be afraid to do so. After all, that is why these groups exist. For example, if you are interested in getting paired up with someone going through a similar situation and you know a certain group can help with that, you may need to take the lead on asking for this type of support and connection. Some resources, like education and information, may be easier to seek out than others, like financial or emotional support. Just remember that you are not alone in asking for help, and the support that you need may just be a phone call or an e-mail away.

Getting involved – While many of you may seek out advocacy organizations to find support, some of you may also desire to get involved and provide support. There are various ways to get involved. Many groups will host charity events, such as a 5k or fun run, and these events are great ways to get involved by either participating or volunteering to help. Other groups may need someone who is willing to provide individual support by talking to someone who is newly diagnosed. The list of ways to get involved is long and can differ between organizations, so if this is something that you think you may be interested in, you can ask someone who is already involved for more information or look for “get involved” type sections on websites. Even if you’re not ready to be actively involved right away, don’t worry – this is something you can do over time.

As mentioned in some of our previous posts, everyone receives and provides support differently, so it is possible that the information provided here won’t exactly work or make sense for you. With that said, if you take one thing away from these posts about support and advocacy, I hope that it will be that no one has to be alone following a diagnosis of cancer or hereditary cancer. There are many resources available. You should not be afraid to seek them out, ask some questions, and decide if this might be something that could help you, even if only in a small way.

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