You probably already know that the rare is rare and less understood, but today, medicine and the journey towards diagnosis have changed drastically because of advocacy.
What exactly is rare disease advocacy and Why do it?
Advocacy is a broad term that is generally used to support an idea or a cause.
Rare disease advocacy is all about finding answers to the never ending problems that are faced by rare disease warriors.
In short, it is about bridging the gap between medicine and the rare.
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What are Rare Diseases and What is the scenario in India?
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WHO defines rare disease as often debilitating lifelong disease or disorder with a prevalence of 1 or less, per 1000 population. However, different countries have their own definitions to suit their specific requirements and in context of their own population, health care system and resources.
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There is however no universally accepted definition of a rare disease.
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The average prevalence thresholds used to define rare diseases ranges among different jurisdictions from 1 to 6 cases/10,000 people, with WHO recommending a prevalence less than 10/10,000 population for defining rare diseases.
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It is estimated that globally around 6000 to 8000 rare diseases exist. We have between 72 to 96 million people affected by rare diseases in the country.
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Source: Latest National Rare Disease Policy, India. Click here to know about the latest rare disease policy.
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Check the list of rare diseases here.
Problems faced by rare disease warriors each day.
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Lack of access to health care.
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Lack of finances.
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Lack of emotional support at home.
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In short, advocacy is all about finding a common roof.
There is clearly no problem solving here,
There is only a problem lessening with your love and support.
Now comes the question,
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Why do we advocate?
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There are not one, not two, there are 7000+ rare diseases across the worl​d.
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Not all rare diseases have a common way of disease progression.
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It's nearly impossible for any doctor to study all the rare diseases as a whole, because of its unique spread and disease progression, meaning the same rare disease can progress in two different ways in two different individuals.
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Knowing the patient's side of the story only helps another rare soul in speedy diagnosis.
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In a nutshell, we advocate to make the unseen seen, unheard heard and unfelt felt.
This is where you can be directly involved in our community. Exciting right?
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Download the freebie pdf here to get involved with us.
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Note: You can choose to volunteer in your area of interest. There are no demands in volunteering.
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How do we advocate?
7000+
Rare Diseases.
5000+
Social Media Tribe.
<5%
FDA Approved Treatment.
Meet our founder
Dr. Shyamala Peesapati
Hi, this is your girl with curly hair, a typical Telugu pilla (Telugu girl) from Silicon City Bengaluru.
Thanks to my Grandpa who decided to name me "Shyamala".
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I started off advocacy without any clue with my Complan jar and a bunch of my dental textbooks. Oh by the way, I graduated from the prestigious Government Dental College and Research Institute, Bengaluru in 2019. That is something that I flaunt with pride okay!
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That's enough about me, I am requesting you all to join me in my journey of making the rare not so rare.
To create awareness so that someone else smiles someday. To know about my personal story head to the Our Story Section.
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You can start supporting me by just hitting a simple follow or watching my videos here. I will definitely love it if you join me.
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Take that first step to walk with me today. I am sure you will feel grateful at the end of the day.