7000+ Rare Diseases More than 70% of rare diseases are genetic, most of which begin in childhood. More than 300 million affected worldwide, which is 4% of world population.
Mostly Genetic & Metabolic
Science Can Cure Rare Is Special provides platform and tools to empower "special" people to share their stories, network and promote discoveries on rare diseases.
Information Sharing & Discovery


Empowering Your Stories, Leading to Discoveries

Rare Is Special is a social enterprise that is developing tools and platform to connect a variety of special people” (patients, families, physicians, scientists, advocacy groups, life science companies, policy makers and other members of public) who are committed in finding the treatments of rare diseases.

Although individual diseases might be considered as “Rare Diseases”, but people suffering from these rare diseases are not rare at all.

Many of rare disease patients will never see cure in their lifetime …


ExperiencesBecome Stories
StoriesInform Minds
Informed MindsMake Discoveries
DiscoveriesCure Diseases

Rare Diseases

Diseases categorized based on organ system affected

Cardiovascular Diseases

Rare Diseases affecting mainly heart, blood vessels (arteries & veins) and blood cells.

Learn More

Respiratory System Diseases

Rare Diseases affecting thorax, lungs and other respiratory system organs and tissues.

Learn More

All Rare Diseases

Check all rare diseases categorized according to different organ systems.

Learn More
Rare Diseases
Rare Diseases Affecting Children
Affected Individuals Worldwide
Diseases with No FDA Approved Drugs

Our Mission

You are "special", we are facilitator


We cater to unmet needs of rare disease patients through our digital services and offline events.


We empower the “special” people by our products to share their experiences and stories with the world.


We strengthen the community by connecting patients, scientists, healthcare providers and many others.

Connect with Us

We will be happy to get your feedback and suggestions.
E-mail: contact@rareisspecial.com

Special News & Stories

Read All News & Stories
News & stories about "special people"

Be real and respect the patient

When I was nursing student, I met a 50 year old beautiful lady who had ALS. She was waiting for me, I noticed a slight movement of her lips as her way of smiling at me every morning at 8:30am. Just like clockwork, her husband arrived shortly after I did.
Read More

Behcet’s Disease Awareness Day: May 20th

Raise more awareness of Behcet’s Disease! May 20th is Behcet’s Awareness Day. Behcet’s Disease is one of the rare diseases in US that is characterized by blood vessel inflammation throughout the body.
Read More

Cleaner Environment, Healthier Life – Cleaning San Diego’s Manzanita Canyon

Rare Is Special volunteered in cleaning drive organized by Project Helping led by Ali Muhammad, a Marine and the "Phoenix Leader" at Project Helping. Volunteers gathered 225 pounds of trash and cleaned 12 graffiti from the 1-mile-long Manzanita Canyon in San Diego.
Read More

Kana’s Story: Vasculitis Patient Conference

Looking back at my experience during a medical conference, I remember a wonderful lady with a very specific disease. Her name was Emily (not the real name for privacy) and the disease is called Behcet’s Disease.
Read More

Forbes features CDG Rare Disease Day Symposium

Forbes.com publishes an article featuring “SBP Rare Disease Day Symposium: Human Glycosylation Disorders“, authored by Dr. Henry Miller from Stanford University. Dr. Miller was one of the speakers at the symposium.
Read More

Rare Diseases and Regulatory Affairs: Rare-is-Special at SDRAN talk

On Wednesday, March 16th, San Diego Regulatory Affairs Network (SDRAN) organized a talk focused on “Regulatory Affairs in Orphan Drug Development”.
Read More

Submit Your Story

If you are interested in submitting your story, please send us your story at contact@rareisspecial.com

Submission Guidelines

Get Involved

Rare Is Special facilitates information sharing and collaboration through our online platform. Partner with us!


Share Your Feedback

Rare Is Special platform is developing multiple tools at this time. We look forward to your feedback.

Contact Us