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Rare Patient Advocates: Who Are They? Know Their 5 Best Roles!

Updated: Oct 7, 2022


"To make the unknown known,

And the unseen shown.

Here, comes the role of a rare patient advocate.

Waiting for hope to be served at their gate".

~Dr. Shyamala Peesapati.


You had been all over the place after listening to this term, "rare patient advocate".

I know, I can understand.

This term sounds new to you.

You want to know who are patient advocates. Not only that, you also want to know what role they play in rare disease advocacy.

Well, I have good news.


I can break it up for you in simpler terms.

Give this blog post a try.

I'm sure you would be beyond blessed to know the role we play.

If you're a rare patient too, welcome to the world of advocacy, my friend.

Consider taking that step towards rare patient advocacy.



Who Are Rare Patient Advocates?


  • They are rare patients themselves, who have a story to tell. They have traveled the road unknown. And, are willing to share their experiences with the world. They are fearless to share their story of living with a rare disease.


  • They share their experiences to create awareness in society. They are the stakeholders and form an integral part of policy-making.


  • In my words, rare patient advocates are the most essential bridges. They bridge the gap between medicine and the rare disease community.

  • They are the most important catalysts who stand up for the rare disease community. They are the voice for the same.


  • They aim to create awareness in society. This is with the hope that another rare diagnosis wouldn't be delayed.

  • An average rare disease diagnosis takes about 8 years. Let me also tell you something else. Not all rare diseases have a common way of disease progression. It's more than ever important to know the journey towards diagnosis today.


  • In short, rare patient advocates are emerging leaders. They are constantly trying to create awareness (being patients themselves). They are aiming to make the world a better place to live for rare disease patients.




What are the principles of advocacy?


To advocate means to have a voice.


  • The first and foremost principle of advocacy is to put people first.

Advocates are strong leaders who are at the forefront to solve peoples’ issues.


They put people and their cause first. Even when it comes with the cost of sacrificing something that means the most to them.


They are tied to their social cause and strive relentlessly to bring about change. Rare disease advocates are dedicated to working for the welfare of patients.


  • Clarity of purpose.

Of what use will it be, if efforts are put in the wrong direction?

If there is no strong reason why your social cause matters to you. All your efforts in multiple directions would go down the drain.


The mission statement of the rare patient advocate should be crystal clear.


It shouldn’t just be about creating awareness and bringing about change.

It is about how you want to create awareness. Whom do you want to approach?

It is about what change would you like to bring about

Figure it down until the last step. Get clear!


  • Confidentiality.

Rare patient advocates often deal with sensitive information. Be it when it is concerned with drug trials or interviews.


The data that the rare patient advocates collect is sensitive. The information is meant to be shared only upon consent.


An advocate must ensure the confidentiality of sensitive data.

They are at times bound by law to keep up the trust of rare patients.


  • Empowerment.

Rare patient advocates lead inspiring lives.

They live to empower others. Empowerment doesn’t really mean that one has to be physically present to motivate people.


This is an era of the internet and technology. Empowering rare lives can be possible in a digital way too. That is the whole motto of “The Rare World Official”.


Check out our website here.

Let us know if you love the idea and want to pitch in too.


Advocates use their pain as a weapon to create a change and make an impact.

Empowerment means creating hope in rare patients’ lives.

To make them realize that they too can earn and make a living.

To make them understand that they can be happy too!


  • Equal opportunity.

The most fulfilling reward of rare disease advocacy is to see the result.

The first thing that tops the list is fighting for equal opportunities.


Rare disease patients are not given opportunities in their jobs.

I am not even exaggerating if I say that many rare disease patients are unemployed.

The cost of the treatment is exorbitant. Patients struggling with their jobs is only adding to the misery.


I can undoubtedly say that this is the most important principle of rare disease advocacy.


  • Accessibility.

I am sure that the doctors aren’t available 24/7 for rare patients. This is when rare patient advocates step into the picture.

They are always easy to be reached out to, because of their constant online presence.


I am sure that advocates cannot replace medical advice. But, advocates can help heal physically and mentally. They are always willing to give moral support and help with patients' mental health.


Essential qualities you need to become a Rare Patient Advocate.


  • You should be closely associated with the rare disease community.

  • You should be fearless to share your story. There is no other way out!

  • I know that you have your voice, so you are here today. I want you to use it.

  • Needless to say, you must be empathetic.

  • Strong leadership skills will definitely make you stand out.

  • Good communication skills, at times being diplomatic, is the key!

  • Ability to work with a team, if the situation demands.

  • Dedication.

  • Consistency and commitment. Not working at your free will, I want you to know that you are expected to stay committed to your cause.

  • Ability to reach out to people, even if they don’t reach out to you.

  • You must be a self-motivated, passion-driven, and authentic person.



What is the role of a rare patient advocate?


  • Be a knowledge-centre for your disease.

As a patient advocate, you are expected to be equipped with knowledge about your disease. Collect as much relevant data as possible.

Keep your data safe. Store them as excel files if need be.


Create notes/files that can be easily shared on social media.

Remember other people with the same rare disease as yours will look up to you over the internet. So, give them as much help as possible.


  • Participate in clinical research.

I want you to remember that clinical drug trials are dependent on you.


I want you to be open-minded to participating in the drug trials. You are the backbone of research. If there can ever come a magical drug that can cure any rare disease, it is because of you!


By the way, I want you to know that over 95% of rare diseases do not have treatment today.


  • Collaborate with other patient groups.

Remember that the birds of the same feather flock together.


The more you reach out to people, the more you collaborate. The more you are active on social media, the more people reach out to you!


It is not about expecting people to come to you. It is about you reaching out first!

Share best practices and key learnings. Build advocacy capacity, and magnify the patient voice.

  • Develop skills to work in the data economy.

Collect, analyze, interpret, and manage data including:

– patient data

– clinical research

– health economics studies.


I would also say to learn essential skills that can help you make money online.

Be it copywriting, blogging, video editing, etc.


The world is huge for those who are willing to create!


  • Get the youth and especially the non-rare disease community involved in your events.

Conduct awareness days and include them in fundraising events.

Give them a token of appreciation if they chose to stand up and care for the rare.


Help organizations in fundraising, and event management.

Own your audience. Build your loyal fan base. The world wants to see you as a leader.



Conclusion:


Now, you have read about the role of patient advocates.

You must be amazed by the role they play to promote better healthcare.


What are you waiting for?

This blog post discusses my story of being associated with a rare disease.


If you feel stuck with unemployment, read this.

This is a blog post about the 10 best job options for people with rare diseases.


Change has to begin with you. Remember this.

Double-tap if you agree.

Show some love by sharing this blog post with your friends and family!

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