The HS Foundation acknowledges the need for advocacy and support for those with HS.
In April 2016, the HS Foundation created the position of National Coordinator of Advocacy and Support.
The HS Foundation utilizes the National Coordinator of Advocacy and Support to represent the HS Foundation and the interests of those with HS in the following areas;
Advocate for HS at national and international meetings and conferences.
Advocate for HS within the pharmaceutical industry.
Advocate for HS within the insurance industry.
Provide resources for those with HS, their caregivers and loved ones.
Assist those with HS and the medical community to develop support resources, including support groups and mental health resources.
Promote open dialogue between patients and medical providers.
How can I raise awareness for HS?
Submit a request for a proclamation of recognition to your state government. For example, the State of Michigan will accept an application for a proclamation declaring a dedicated HS day. Not all states have this option available, but many do. To access a list of states and contacts for proclamation requests, please visit http://heartheroes.org/wp-content/uploads/Proc-Request-Links-States.pdf
Create an awareness event. Events can be costly, but tagging on to existing events is a way to inexpensively hold an awareness event. For example, look for community walks or runs that allow you to create a team within the event. For the past 2 years, Hope for HS created a team within the Color Vibe 5K. Remember that creating awareness involves not just the person living with HS, but also equally involves your support system. Approach family and friends about participation.
If the above mentioned are not possible, then start small. Never underestimate the importance of spreading awareness by word of mouth! Make it a point to tell 2 people each week about HS. Ask those 2 persons to tell 2 more people, and so on. Social media has been a great way to easily distribute information. While social media is useful, remember that face to face contact and hearing your experience directly from you carries much impact. As a tool to discuss HS, Hope for HS created a 10 minute documentary on the quality of life impacts of HS. Many use this as an ice breaker to talk about the impacts of HS. This documentary can also be easily shared through social media.