Do you have a passion for advocacy?
Do you have Ehlers-Danlos Syndrome or another chronic illness and have found it hard to get
adequate diagnosis and treatment?
Do you find yourself advocating for others with a condition you or a loved one live with daily?
Help be the change by Speaking Out with us!
- Find and support local petitions like our Atrium Health Petition for increased and expanded care in North Carolina, promoting a hub for EDS/HSD care.
- Start your own petition and use social media to grow awarness!
- Share your own story and/or the stories of others in writing.
- Start a blog!
- Submit stories to local newspapers and journals.
- Advocate publicaly!
- Organize awareness events at community centers, local schools and in the workplace.
- Contact local physicans and clinics as an advocate and request to meet personally with doctors and/or staff.
Advocacy can mean many things, from public speaking to becoming an amature expert in a condition through research. Think about how your natural gifts and interests could be used to raise awareness.
Most advocates are not medical professionals! They are patients and family members of patients who developed a passion for advocacy through their own personal journey.
- General Patient Advocacy Training
- https://www.healthadvocateprograms.com/master-list/ Free & Paid
- https://paftraining.talentlms.com/index Free, Open Registration
- https://gateway.on24.com/wcc/eh/1258749/category/36264/welcome-to-the-education-resource-library Library & Programs for advocacy
- https://www.pacboard.org/eligibility/ Patient Advocacy Certification (for those interested in professional work in hospitals, clinics and end of life care).
- Ehlers-Danlos Syndromes & Hypermobility Spectrum Disorder Specific Advocacy Training
- https://www.ehlers-danlos.com/become-an-advocate/ Free & Paid, by application
- https://www.ehlers-danlos.com/brochures/ printable brochures and presentations for advocacy and awareness
What types of advocacy are there?
There are a few basic categories of advocacy, and most advocates fit into more than one. Here are three of the most common:
Individual Advocacy – working one-on-one with a patient serving their needs from education and help managing care to visiting doctors with them, helping with paperwork and insurance appeals, and finding funding for treatment.
Community Advocacy – public support of many kinds. Starting support groups, public speaking for awareness, starting a blog or using other social media avenues to raise awareness for a condition and amplify the voices of the patients.
Research Advocacy – contributing to the efforts of other advocates and communities by engaging at the academic level in medical issues, diagnoses, treatments, etc. and creating resources for others to use. This can also include volunteering with medical research teams to help support their work.
Do I need specialized training in order to be a patient advocate?
No! Most advocates do not have specialized training such as medical school or therapeutic training. The best advocates are often family of loved ones with a specific condition, or the patients themselves. That said, if you decide to pursue advocacy efforts you should seek ongoing education about the conditions in which you specialize, the issues that surround them, and training in types of advocacy, advocacy ethics, and methods of advocacy so that you can be an asset to the community.
Do I have to do public speaking in order to be a patient advocate?
Definitely not. There are many volunteer opportunities and advocacy efforts that can be supported through social media, or one on one with physicians, patients, caregivers and other advocates.
Can I volunteer my efforts or help out part time when I can?
Yes! We love an appreciate those who volunteer their time on behalf of our needs and community. You can go solo and build your own network, or look for a non-profit organization in need of volunteers.
Do I have to volunteer my efforts?
No you do not have to volunteer. If you choose to become a professional advocate you should take time to examine various training courses and advocacy communities to find your niche and receive training in any areas of advocacy which you might be less experienced. Some advocates start their own businesses, others pursue employment through an agency. Both have their pros and cons that need thorough consideration.
Have more questions not answered here? Email us at email@example.com!
Many training programs have communities that you can join during training and stay with afterwards for support. More communities can be found:
- On Facebook
- Local Non-profits
- Other Advocates
RLPAC is starting a new social media group for medical professionals, caregivers and patients who are interested in becoming professional or volunteer patient advocates. Join us online to ask your questions and see if patient advocacy is right for you!