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8 Surprisingly Effective Ways How Doctors Can Help The Rare Disease Patients.

Updated: Sep 10, 2022


A survey was conducted by the University of La Rioja (UR), Spain in 2014. It was to assess the knowledge of healthcare professionals, that is doctors, on rare diseases.

Surprisingly, only around 25% of the survey sample knew the definitions of rare diseases and orphan drugs. Resident doctors did not have the experience nor the time to diagnose and treat rare diseases.

This is today's problem and the root cause lies in the lack of awareness.




“Not everyone who wears a white apron righteously is next to God.

Not everyone can save lives,

Some are silent killers too,

Just deadly monsters dressed in disguise” -

Dr. Shyamala Peesapati (May 29, 2018)


Dear doctor/healthcare professional,

The problem lies not in you, but in a lack of awareness about rare diseases. The struggle to get the right diagnosis is real.

In fact, it is today’s problem that even in the world of the internet we are falling behind miserably.

If that is incredible, let me quote another case report.


A paper was published by the Department of Pediatrics, University of Amsterdam, Netherlands. It was in the year 2010.

It says that ‘Doctor Google’ ends the diagnostic odyssey in lysosomal storage disorders. Parents were using internet search engines. The Internet has become an efficient diagnostic strategy for rare diseases.

The paper ends like this.

When confronted with unrecognized signs and symptoms, physicians themselves should use Internet searches. This can be a part of their diagnostic strategy. This prevents unacceptable diagnostic delays.

So that is the power of the Internet and Social Media.

Let me tell you about another survey which tells us about the rare situation in India.


A survey was conducted in Hyderabad, India in 2019. It told us about the baseline knowledge of rare diseases in India.

The survey was given to the following people. Those with a minimum of college education, and people living in metropolitan cities. It also covered Indian people living in the USA.


It was found that more than 70% of people in India do not have basic knowledge of rare diseases.

60% of people with little or no formal education live in rural areas.


The sample survey results are consistent with the expectation. India needs to do more to raise awareness of rare diseases.

I only hope that I have convinced you enough.




If you have made a choice to empower rare lives, the digital way, here is my heartfelt gratitude to you.

Welcome to The Rare World Official!


Let me quickly tell you the 8 simplest yet most effective ways in which you can make a difference.

These are the tiniest tasks of all, believe me, you can do it!

Don't have second thoughts.

After doing it, you might even be surprised about the impact you can make in the rare disease community.

Let’s get started now!

1) Stay active on social media.


First of all, I understand how difficult it is to find time in your hectic schedule. I have been there too!

Still, kindly consider my request.

By social media, I mean having an active account on

Facebook

Instagram

Twitter

LinkedIn

I can't stress enough on LinkedIn. It's the most professionally used platform.

Instagram and Twitter are optional.

At least, Facebook and LinkedIn are two important places where patients look up for you.

Also, by active I mean checking your messages every day, to say the least.

If you are active in posting pictures or sharing your experiences too, there is nothing like it!


2) Name yourself in the right way

Have your original name on social media.

(Something that's on your class 10 certificate, I mean)

That way it is easier for people to find you.

Having one name on all platforms, both personal and professional is highly recommended.


3) Consent is mandatory.

Be mindful when sharing your patient experiences or stories on social media.

I cannot stress this enough!


Always and always take informed consent. If possible, written consent from the patient or the primary caretaker. Do this before posting the pictures/data or the information across social media.

You don't want to attract evil eyes. Do you?


4) Educate your patient.

Always encourage your patient to start advocating. That will definitely help us in bridging the gap between medicine and the rare.

By advocating, I simply mean sharing their experiences on social media.

It includes connecting with other rare disease warriors across the world. Rare disease patients can be a part of patient advocacy groups too!

Rare patients can be encouraged to start a blog or make videos about the same.

Read this blog to know the patient’s role in creating awareness about rare diseases.




5) Be a part of our rare team.

Take part in our monthly awareness campaign. You will be expected to post your photograph with the right hashtags and tag us.


Here is our website.

Check out our Instagram page to know more.

Check out our blogs here to know more about the rare.


6) Rare Research is in your hands.

Promote rare research. Take part in debates, papers, or poster presentations.

Speak about the rare and let us know. Tag us on Instagram.


Take up any rare disease as your topic and let us grow.


7) Teach through the lens of the rare.

You can teach medical subjects through the lens of a rare disease.


Ah! And I love to talk about dentistry-related rare diseases.

These are mentioned in the Shafers Textbook of Oral Pathology or Burkets Oral Medicine.


Osteogenesis Imperfecta, Scleroderma, Ehler-Danlos Syndrome, Hypophosphotesia, Eagle Syndrome, Granulomatosis with Polyangiitis, Progeria etc.

These are only a few to name.


I humbly request the staff of various colleges to teach through the lens of a rare disease.

Emphasize on the word ‘rare’.

Let's work together to bridge the gap between medicine and the rare.


Trust me, there are 9.2 million doctors in the world.

And only 7000+ rare Diseases.

Still, we are falling behind.

To the doctor who is reading this, you are our only hope.


8) Come and volunteer.

If you enjoy being a part of this cause, please write to us at therareworldofficial@gmail.com.

We would absolutely love it if you choose to volunteer with us.

Not only from the medical perspective, but you can also volunteer in your areas of interest too.

Be it painting, content writing, graphic designing, video editing, etc.

Trust me when I say this, the sky is the limit if you want to volunteer.

I am hoping that this blog has inspired you, even to that tiniest fraction of raising awareness for the rare.

If yes, please share this post with other doctors, friends, and family.

Subscribe to our YouTube channel here.


Lastly, together we can!

Together we are a lot more!

You can make a change.





Some of the organizations and resources for patients with rare diseases in India.





















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