Create a “care page” – a list of your best resources that someone who is newly diagnosed could go to when starting to advocate for themselves or a loved one. Remember to include sites that lead to successful self advocacy!
I have included links that teach you how and when to self-advocate, how to develop these skills, and some blogs by patient-advocates:
- understanding self-advocay – general overview and understanding of all types of self-advocacy
- Patient resource for self-advocacy – does include bits for the caregiver as well
- Journey and tips from a patient advocate – The Hurt blogger
- Journey and tips from a patient advocate – Chronic Curve
- Health care self advocacy – How to develop patient advocacy-skills. Great tips and information
I think that effective advocacy can only come if you as a patient are knowledgeable about your disease, and the treatment options out there. So I wanted to include some resources that have good accurate information, and organisation that are out there to help patients (there are some sites related to specific conditions, but this is mainly one’s that I have, as they are resources that I use):
- National Organization for Rare Disorders (NORD) – for those of us with rare diseases
- The NOMID Alliance – this organisation is geared towards helping patients who have auto-inflammatory diseases
- Invisible Disabilities Association
- American Pain Foundation
- American Chronic Pain Association
- American College of Rheumatology
- American Autoimmune Related Diseases Association
- Canadian Rheumatology Association
- Arthritis National Research Foundation
- Arthritis Research UK
- Children’s Chronic Arthritis Association (UK)
- International Still’s Disease Foundation
- National Fibromyalgia Association
- Lupus Alliance of America
- Lupus Canada
- Lupus Foundation of America
- Empowering Caregivers
- Mayo clinic
Information on medications:
Actemra (Tocilizumab)
Enbrel
Hizentra (subcutaneous-immunoglobulin-therapy)
Humera
Immunoglobulin Therapy
Orencia
RAPPORT Clinical Trials (Rilanacept)
Remicade (Infliximab)
Rituxan (Rituximab)
justanotherspoonie 