Advocacy improves awareness, care, and quality of life for people with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). Anyone can be an advocate. Whether you speak up for yourself, support someone else, or work to improve systems and policies, advocacy helps ensure that lived experiences are heard and respected.
This guide explains what advocacy is, why it matters in EDS and HSD, and provides resources to build your skills.
Advocacy improves awareness, care, and quality of life for people with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). Anyone can be an advocate. Whether you speak up for yourself, support someone else, or work to improve systems and policies, advocacy helps ensure that lived experiences are heard and respected.
This guide explains what advocacy is, why it matters in EDS and HSD, and provides resources to build your skills.
What Is Advocacy?
Advocacy means speaking up for your own needs or the needs of others. It is about helping people to be heard, understood, and respected. Advocacy can also involve working to improve systems, services, or policies so they better meet people’s needs.
Advocacy can take different forms. The three main types are:
Self-advocacy
Self-advocacy means speaking up for your own needs, preferences, and rights.
This may include:
- Understanding your needs
- Knowing your rights
- Communicating clearly with others
- Requesting accommodations
Many people self-advocate in everyday situations. For example, a student may ask for accommodations at school or university to support their learning.
Individual advocacy
Individual advocacy focuses on supporting one person, or a small number of people.
This can be:
- Informal, such as support from family members or friends
- Formal, through an organization like a government agency or nonprofit
For example, a parent may speak with a school to support their child’s needs. In other situations, organizations may help people access housing, healthcare, or financial support.
Systems advocacy
Systems advocacy focuses on improving services, policies, or laws. This type of advocacy aims to create change at a wider level, such as:
- Improving access to healthcare
- Influencing policy decisions
- Raising awareness of specific conditions
Systems advocacy often involves collaboration between organizations, researchers, policymakers, and community groups. For example, an organization may collaborate with others to lobby for changes to the current disability rights legislation.
Advocacy can take place in different settings, depending on what support is needed.
Healthcare systems can be complex to navigate, especially for people with long-term health conditions and caregivers.
Healthcare advocacy may involve:
- Helping people access the correct care and services
- Supporting communication with healthcare professionals
- Educating patients
- Helping with insurance, administrative, and legal issues
Some healthcare advocates work within organizations or healthcare systems. Others are family members, caregivers, or community members supporting someone they know. There are also healthcare advocacy groups that work for system-wide changes in healthcare access, funding, and more.
Legal advocacy helps people understand and navigate legal systems.
Legal advocates are often trained professionals that can:
- Explain legal rights and options
- Support people through legal processes
- Help with forms and administrative tasks
They often work with specific groups, such as children, people seeking asylum, or people affected by crime.
Victim advocacy provides both practical and emotional support.
This may include:
- Safety planning
- Crisis support
- Helping people access services such as housing or mental health support
Victim advocates often work alongside legal services but focus on supporting the person’s overall well-being. Victim advocates need to be educated on the law, but many professionals come from therapy or social work backgrounds.
What Is Advocacy?
Advocacy means speaking up for your own needs or the needs of others. It is about helping people to be heard, understood, and respected. Advocacy can also involve working to improve systems, services, or policies so they better meet people’s needs.
Advocacy can take different forms. The three main types are:
Self-advocacy
Self-advocacy means speaking up for your own needs, preferences, and rights.
This may include:
- Understanding your needs
- Knowing your rights
- Communicating clearly with others
- Requesting accommodations
Many people self-advocate in everyday situations. For example, a student may ask for accommodations at school or university to support their learning.
Individual advocacy
Individual advocacy focuses on supporting one person, or a small number of people.
This can be:
- Informal, such as support from family members or friends
- Formal, through an organization like a government agency or nonprofit
For example, a parent may speak with a school to support their child’s needs. In other situations, organizations may help people access housing, healthcare, or financial support.
Systems advocacy
Systems advocacy focuses on improving services, policies, or laws. This type of advocacy aims to create change at a wider level, such as:
- Improving access to healthcare
- Influencing policy decisions
- Raising awareness of specific conditions
Systems advocacy often involves collaboration between organizations, researchers, policymakers, and community groups. For example, an organization may collaborate with others to lobby for changes to the current disability rights legislation.
Advocacy can take place in different settings, depending on what support is needed.
Healthcare systems can be complex to navigate, especially for people with long-term health conditions and caregivers.
Healthcare advocacy may involve:
- Helping people access the correct care and services
- Supporting communication with healthcare professionals
- Educating patients
- Helping with insurance, administrative, and legal issues
Some healthcare advocates work within organizations or healthcare systems. Others are family members, caregivers, or community members supporting someone they know. There are also healthcare advocacy groups that work for system-wide changes in healthcare access, funding, and more.
Legal advocacy helps people understand and navigate legal systems.
Legal advocates are often trained professionals that can:
- Explain legal rights and options
- Support people through legal processes
- Help with forms and administrative tasks
They often work with specific groups, such as children, people seeking asylum, or people affected by crime.
Victim advocacy provides both practical and emotional support.
This may include:
- Safety planning
- Crisis support
- Helping people access services such as housing or mental health support
Victim advocates often work alongside legal services but focus on supporting the person’s overall well-being. Victim advocates need to be educated on the law, but many professionals come from therapy or social work backgrounds.
Step-By-Step: Getting Started With Advocacy
Advocates come from all backgrounds, including people with EDS or HSD, caregivers, family members, or professionals. Advocacy often starts with small, everyday actions, like speaking up for a relative or asking for accommodations at school or work. If you are new to advocacy, you may find it helpful to take small steps.
- Identify your goal
Think about what you want to change or improve. - Learn more
Build your understanding of EDS and HSD and the systems you are navigating. - Take small actions
Start with manageable steps that fit your energy and circumstances like sharing printable materials or supporting awareness campaigns and fundraising. - Connect with others
Join community discussions or support networks talking about research, policy, or community issues. - Build your skills over time
Consider training or learning opportunities if you want to develop further.
Training for Advocates
Many organizations offer training and resources to help people advocate effectively. These programs include a range of free and paid options, so you can choose what best fits your goals, energy, and interests.
EDS ECHO Health Advocacy Program
Who it’s for: People with EDS or HSD who want to support others and help improve care.
What it offers: An online program that teaches practical advocacy skills. This includes learning how to navigate healthcare, communicate needs clearly, and support others living with EDS or HSD. The program values lived experience and encourages evidence‑based care.
Format: Online sessions with guided learning and group discussion.
EDS ECHO Caregivers Program
Who it’s for: Caregivers who support someone with EDS or HSD.
What it offers: An online program that builds caregiving and advocacy skills. It helps caregivers communicate with healthcare providers and support daily care and decision‑making. The program highlights teamwork, self‑care, and long‑term support.
Format: Online sessions with guided learning and group discussion.
Rare Disease Legislative Advocates
Who it’s for: People and organizations interested in policy and legislative advocacy.
What it offers: An online hub of tools and education to help advocates work with state and federal policymakers. It explains health policy and supports coordinated advocacy efforts.
Format: Training materials, events, and advocacy campaigns.
International Advocacy for Rare Diseases
Who it’s for: People who want to learn about international advocacy.
What it offers: A free course that explains international advocacy systems, institutions, and strategies. It focuses on improving outcomes for people with rare diseases around the world.
Format: Online course with structured modules.
BMJ Patient and Public Partnership
Who it’s for: People who want to share lived experience in healthcare research and publishing.
What it offers: Opportunities to take part in research commentary, review, education, and editorial work by sharing community perspectives.
Format: Ongoing participation opportunities.
Rare Advocacy Movement
Who it’s for: People who want to understand the advocacy landscape and identify key stakeholders.
What it offers: Simple educational resources that explain how rare disease advocacy is organized. These materials describe how power works in this space and what challenges advocates often face.
Format: Articles, learning materials, and chances to connect with others.
Eupati Open Classroom
Who it’s for: People who want to learn about research and medicine development.
What it offers: Online courses that explain how patients can take part in research and understand how medicines are developed.
Format: On-demand courses with optional certificates.
Rare University
Who it’s for: People who want to build advocacy skills.
What it offers: A free learning hub from Global Genes with online resources and toolkits. It covers advocacy basics and related topics in many formats.
Format: Courses and resources such as videos, blogs, podcasts, reports, and stories.
Training for Advocates
Many organizations offer training and resources to help people advocate effectively. These programs include a range of free and paid options, so you can choose what best fits your goals, energy, and interests.
EDS ECHO Health Advocacy Program
Who it’s for: People with EDS or HSD who want to support others and help improve care.
What it offers: An online program that teaches practical advocacy skills. This includes learning how to navigate healthcare, communicate needs clearly, and support others living with EDS or HSD. The program values lived experience and encourages evidence‑based care.
Format: Online sessions with guided learning and group discussion.
EDS ECHO Caregivers Program
Who it’s for: Caregivers who support someone with EDS or HSD.
What it offers: An online program that builds caregiving and advocacy skills. It helps caregivers communicate with healthcare providers and support daily care and decision‑making. The program highlights teamwork, self‑care, and long‑term support.
Format: Online sessions with guided learning and group discussion.
Rare Disease Legislative Advocates
Who it’s for: People and organizations interested in policy and legislative advocacy.
What it offers: An online hub of tools and education to help advocates work with state and federal policymakers. It explains health policy and supports coordinated advocacy efforts.
Format: Training materials, events, and advocacy campaigns.
International Advocacy for Rare Diseases
Who it’s for: People who want to learn about international advocacy.
What it offers: A free course that explains international advocacy systems, institutions, and strategies. It focuses on improving outcomes for people with rare diseases around the world.
Format: Online course with structured modules.
BMJ Patient and Public Partnership
Who it’s for: People who want to share lived experience in healthcare research and publishing.
What it offers: Opportunities to take part in research commentary, review, education, and editorial work by sharing community perspectives.
Format: Ongoing participation opportunities.
Rare Advocacy Movement
Who it’s for: People who want to understand the advocacy landscape and identify key stakeholders.
What it offers: Simple educational resources that explain how rare disease advocacy is organized. These materials describe how power works in this space and what challenges advocates often face.
Format: Articles, learning materials, and chances to connect with others.
Eupati Open Classroom
Who it’s for: People who want to learn about research and medicine development.
What it offers: Online courses that explain how patients can take part in research and understand how medicines are developed.
Format: On-demand courses with optional certificates.
Rare University
Who it’s for: People who want to build advocacy skills.
What it offers: A free learning hub from Global Genes with online resources and toolkits. It covers advocacy basics and related topics in many formats.
Format: Courses and resources such as videos, blogs, podcasts, reports, and stories.
Resources for Advocates
Explore these resources to find tools and approaches that work for you.
