The Alpha-1 ADVOCACY Pathway

Do you want to become an advocate for Alpha-1 and wonder where to begin? Or, perhaps you currently are an Alpha-1 Advocate and want to broaden your advocacy efforts.

Advocacy includes a wide range of actions and it’s easy to get lost in the information. The Alpha-1 ADVOCACY Pathway will help you through this decision-making process in five interactive steps.

YOU can be an Alpha-1 Advocate!

To continue please click on the white button below.

To proceed to the Get Started Page, click here.

What is Alpha-1?

What is Alpha-1?

One of the first steps in becoming an Alpha-1 Advocate is having a clear understanding of what Alpha-1 Antitrypsin Deficiency (Alpha-1) is. Alpha-1 is a hereditary condition that is passed on from parents to their children through genes. This condition may result in serious lung disease in adults and/or liver disease in infants, children and adults.

For an overview of Alpha-1 click the Learn More button below.

What is Advocacy?

What is Advocacy?

ADVOCACY is defined as any action that speaks in favor of, recommends, argues for a cause, supports, defends, or pleads on behalf of others. Advocacy strategies can include communication through social media marketing, press relations, patient & physician education, lobbying, community organising, and many other awareness actions.

An Alpha-1 Advocate is someone who works to raise awareness about Alpha-1 and/or helps to change public opinion and policy to improve access to care for Alphas.

Do what you can, where you are,
with what you have.-Teddy Roosevelt
Am I an Advocate?

Am I an Advocate?

Some believe they don’t qualify to be an Alpha-1 Advocate because of a lack of prior advocacy experience, or because they don’t like speaking in public. Yet all that is required to be an Alpha-1 Advocate is a willingness to actively participate in finding a solution to improve the lives of Alphas on a local or national level. Every time you speak on behalf of someone, or provide new educational information to a group or individual, you are an advocate. View the video on the right to learn how others started on their advocacy pathway.

When you’re surrounded by people who share a passionate commitment around a common purpose, anything is possible.- Howard Schultz
Why is Advocacy URGENTLY Needed?

Why is Advocacy URGENTLY Needed?

The lack of awareness around Alpha-1 requires policy solutions in healthcare systems in many countries. Effective policy solutions for Alpha-1 are not necessarily complicated, but the lack of awareness around the disorder means that healthcare policy has omitted key elements for patients. This is an area where a country’s national policy makers can make positive and rapid changes to patients’ lives. A lack of political action creates a vicious cycle, where unaddressed issues contribute to an increased burden for Alpha-1 patients and healthcare systems.

The time for action is now. It’s never too late to do something.- Antoine de Saint-Exupery
Where Do I Start?

Where Do I Start?

Advocacy comes in several forms; the one that is appropriate for you will depend on your personal journey with Alpha-1, your skills and personality, and how much time you are able to invest in your advocacy efforts.

There are five Alpha-1 Advocacy categories. You can be a:

  • · Self Advocate
  • · Social Media Advocate
  • · Community Advocate
  • · Policy/Legislative Advocate
  • · Patient Organisation Leader/Advocate

To help you decide an advocacy type that fits you best, explore the five cards to the right. Once you’ve decided on an advocacy type, click on the “Get Started” card to begin your Alpha-1 ADVOCACY Pathway training!

2Social Media

Self Advocacy

Self-Advocacy is the ability to speak and act on your own behalf; for this introduction we will also include speaking on behalf of a loved one. Taking responsibility for your own wellness means developing healthy habits, carving out space in your life for self-care, educating yourself, keeping good records, joining a patient registry, and assertive physician communication; each are a part of being a skilled Self-Advocate. Every time that you speak up for yourself or others, you take on the role of being an Advocate.

If you’re advocating on behalf of a loved one, you’ll need to consider the estimated time that supporting someone will take; practical and sometimes emotional support. Each task could mean a daily, weekly or monthly commitment and is highly rewarding.

You CAN be your own ADVOCATE!


Social Media Advocacy

A Social Media Advocate uses social media channels to actively bring about awareness and education to their networks of followers and friends. The most common social media channels are: Facebook, Twitter, Instagram, & YouTube.

Social media, as an advocacy tool, has increased exponentially in the past several years and is used among individuals, non-profit organisations, companies and community/civic groups, to leverage their voice and bring attention to awareness and help move forward desired public policy results.

This form of advocacy probably takes the least amount of time, and can be very effective in getting a message out into your network; it also can be done from the convenience of your home or on-the-go with a laptop computer or hand-held device. Often times social media postings from local Alpha-1 organisations or from Alpha-1 Global can be regularly reposted, reducing the time it takes to find and develop content.

Things to consider:

  • Which social media channels you’ll engage
  • Collaboration with any local Alpha-1 organisations for message development
  • Time requirements; 3-5 hours per week is recommended
  • Building a network of followers/friends
  • Decide on posting frequency; it’s important to be regular and consistent

Take the first step, it’s 50% of the process in becoming an ADVOCATE!


Community Advocacy

If speaking before small or large groups is energizing and enjoyable, you may want to give Community Advocacy some serious consideration. Some will take their personal profession, notoriety or passion (sports for example) to effectively build an audience to bring about awareness and leverage change in public opinion. Communications with different media entities, creating press releases and participating in interesting events is often a part of this type of advocacy. Your audience may be to a group of Alphas, in front of group of physicians, or to the general public.

Things to consider:

  • Do you have an interesting passion or profession?
  • Do you enjoy and are you a good communicator?
  • Time requirements: 5-20 hours per week
  • Comfort level of being in the public spotlight
  • Developing your message

Whether an Alpha or an Alpha-Ally, you CAN be an ADVOCATE!


Policy Advocacy

A Policy Advocate informs and influences the policy and legislative making process. Legislators (or members of parliament) and regulators often are not adequately informed on issues that surround Alpha patients. This level of advocacy requires expert knowledge and an individual who is well-informed and willing to meet face to face with legislators or appear before committees who make decisions which affect the Alpha community in your country.

Working closely with established Alpha-1 associations is vital to the integrity of policy advocacy. While countries have different governance structures and healthcare systems that demand a unique approach to advocacy, much can be learned from the experience of Alpha-1 communities that have faced these same challenges and won some hard fought battles.

Things to consider:

  • Time requirements 5-20 hour per week, or more
  • Comfort level of speaking in public
  • Developing your message
  • Understanding and comfortability in working within the legislative processes and structure

Make a difference; be an ADVOCATE!


Patient Organisation Leader/Advocacy

Advocacy on this level involves an ongoing, long-term commitment to establishing and organizing an Alpha-1 Association in your country. Your national patient organisation will need to be an effective group, working toward improving treatment and diagnosis of Alpha-1 for your community. It is important to realise that you will be working with your doctors, nurses and those concerned with administering the health service in your country at a national, regional and local level.

Because nobody can do all the work needed, Organization Advocacy requires someone who enjoys leading groups of people toward common goals, holding formal meetings, attending medical conferences, fundraising and many other tasks which require administrative and motivational skills. Additionally, this kind of advocacy incorporates all advocacy types.

Things to consider:

  • Time requirements – ongoing, part-time to full-time
  • Skill set requirements: administrative, motivational, organizational, leadership
  • Participation and understanding in multiple levels of advocacy and patient support
  • Organisational message development

Helping others by being an ADVOCATE is very satisfying!