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Rare Disease Day was almost 3 months ago, but that doesn't mean we can't keep celebrating our day. Continuing to let our light shine helps with #awareness, inspires families, and motivates us as we continue to the next #rarediseaseday

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All about Rare Disease Day and their Chain of Lights

Get ready to continue the Global Chain of Lights, share your colors and join everyone in a show of global solidarity for the Rare Disease Day...


#Pfizer strong Vyndaqel sales draw attention to #raredisease drug’s patent life
Sales of the treatment for #transthyretinamyloidose widely beat Wall Street forecasts in the first quarter. The company is working to extend its patent exclusivity. Maybe this will bring more investment, research,... and cures.

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Pfizer’s strong Vyndaqel sales draw attention to rare disease drug’s patent life

Sales of the transthyretin amyloidosis treatment widely beat Wall Street forecasts in the first quarter. The company aims to extend its patent...


TeleRare Health launched to offer virtual care appointments for individuals with #rarediseases, focusing on diagnosis, disease assessment, and ongoing care.

We directly benefited from Telehealth and are so happy this is available for families in rare disease communities!

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TeleRare Health | Virtual Care for Rare & Genetic Diseases

Find your geneticist, today. Your path to compassionate and responsive care begins here. Schedule your Appointment Find your geneticist, today. Your...


Takeda Pharmaceutical is continuing to highlight the unpredictable burden of hereditary angioedema in its Discover #HAE campaign. The patient stories describe the life of a patient with the #raredisease #HereditaryAngioedema (HAE).

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Your Hereditary Angioedema Resource

We're here to help you find hereditary angioedema answers.


I’m an optimistic and positive person. I choose to focus on the good and beautiful moments, but upon reflection, I think it’s disingenuous, not to mention the failures. I’ve written many columns discussing the challenges we’ve faced with a rare disease and documenting our family’s hard ...work, but I never talk about the times when I hung my head in shame.

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Learning from failure sets me up for future success as a parent

Columnist Richard E. Poulin III recognizes that learning from failure is key to maintaining his relationship with his AADC-deficient daughter.


Our mission to connect with schools shows the power of students who want to make a difference. Hadee Pandwani, a senior at International School of Tanganyika (IST) is such a wonderful role model for the youth. You are well on your way to being a #raredisease advocate!

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How to become a rare disease advocate | Hadee Pandwani | TEDxUpanga Youth

I found my rare passion for Rare Disease activism for rare diseases in 2019. In my TedX speech, I aim to explore the deeper meaning of being a rare...

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