off-book mindful

For Rare Disease Daily #21, yannick-robin explains 2,4-Dienoyl-CoA Reductase Deficiency in approachable and ethical layman's terms.

Hello all, hope you’re well. There was a break in dailies due to the change in climate last week in New York City, bringing its effects to the disabled communities in a heavier way than for some others. I appreciate your patience with the space between these moments of awareness as physical saf...

For Rare Disease Daily #20, yannick-robin explains 1q44 Microdeletion Syndrome in approachable and ethical layman's terms.

Rare Disease Daily aims to raise awareness for the community of approximately 30 million US citizens, made up of over 7,000 varying rare disorder and disease patients that desperately need your resources and help, for the sake of their basic human rights and equality, as well as to encourage every ...

For Rare Disease Daily #19, yannick-robin explains 1q21.1 Microdeletion Syndrome in approachable and ethical layman's terms.

Rare Disease Daily aims to raise awareness for the community of approximately 30 million US citizens, made up of over 7,000 varying rare disorder and disease patients that desperately need your resources and help, for the sake of their basic human rights and equality, as well as to encourage ever...

For Rare Disease Daily #18, yannick-robin explains 1q Duplication Syndrome in approachable and ethical layman's terms.

Rare Disease Daily aims to raise awareness for the community of approximately 30 million US citizens, made up of over 7,000 varying rare disorder and disease patients that desperately need your resources and help, for the sake of their basic human rights and equality, as well as to encourage every list...

For Rare Disease Daily #17, yannick-robin explains 19p13.12 Microdeletion Syndrome in approachable and ethical layman's terms.

Rare Disease Daily aims to raise awareness for the community of approximately 30 million US citizens, made up of over 7,000 varying rare disorder and disease patients that desperately need your resources and help, for the sake of their basic human rights and equality, as well as to encourage ev...

For Rare Disease Daily #16, yannick-robin explains 18 Hydroxylase Deficiency in approachable and ethical layman's terms.

Rare Disease Daily aims to raise awareness for the community of approximately 30 million US citizens, made up of over 7,000 varying rare disorder and disease patients that desperately need your resources and help, for the sake of their basic human rights and equality, as well as to encourage every li...

For Rare Disease Daily #15, yannick-robin explains 17q23.1q23.2 Microdeletion Syndrome in approachable and ethical layman's terms.

Rare Disease Daily aims to raise awareness for the community of approximately 30 million US citizens, made up of over 7,000 varying rare disorder and disease patients that desperately need your resources and help, for the sake of their basic human rights and equality, as well as to encourag...

For Storytime #3 + Rare Disease Daily #14, yannick-robin explains 17q23.1q23.2 Microdeletion Syndrome in approachable and ethical layman's terms, after walking us through the importance of naming every individual disease. 

Rare Disease Daily aims to raise awareness for the community of approximately 30 million US citizens, made up of over 7,000 varying rare disorder and disease patients that desperately need your resou...

For Rare Disease Daily #13, yannick-robin explains 17q12 Deletion Syndrome in approachable and ethical layman's terms.

Hi friends, hope you’re well. What can I say, the disabilities be disabling me sometimes, which is why yesterday didn’t happen for Rare Disease Daily. It’s daily with a little star next to it that says “if there are the spoons for it”, you know what I mean? For non spoonies, the spoon theory essentially ma...

In this week's storytime, yannick-robin tells us about what the experience of meeting someone else with the same rare disease as him was like, including a portion of the speech he watched that person give, during the Living Rare Summit in Washington D.C., where they met. Thank you to the National Organization for Rare Diseases for allowing me to share her wonderful words with everyone.

Read English transcript, here.

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En ...

For Rare Disease Daily #12, yannick-robin explains 17-beta Hydroxysteroid Dehydrogenase 3 Deficiency in approachable and ethical layman's terms.

I want to preface with an apology to all intersex and TGNC people that find it hard to access resources that are equitable for them, not gendered and restrictive to a binary. I did my best to help you, if there’s anything I missed please let me know and I will edit accordingly!

For Rare Disease Daily #11, yannick-robin explains 17-alpha-hydroxylase Deficiency, one of many disorders that can cause a person to be intersex, in approachable and ethical layman's terms.

Rare Disease Daily aims to raise awareness for the community of approximately 30 million US citizens, made up of over 7,000 varying rare disorder and disease patients that desperately need your resources and help, for the sake of their b...

For Rare Disease Daily #10, yannick-robin explains 16q24.3 Microdeletion Syndrome in approachable and ethical layman's terms.

Rare Disease Daily aims to raise awareness for the community of approximately 30 million US citizens, made up of over 7,000 varying rare disorder and disease patients that desperately need your resources and help, for the sake of their basic human rights and equality, as well as to encourage every li...

In the first breakaway from Rare Disease Daily, we hear yannick-robin speak on some rather disturbing truths: the slavery of his family past, working with the National Organization for Rare Diseases, the realization that the country you're in - as well as your field, and every field - is not the nicest place for you to be.

The short film of the same name, can be seen on YouTube!

Transcript in English

Transcript in Spanish

For Rare Disease Daily #9, yannick-robin explains 16p13.11 Microduplication Syndrome.

Rare Disease Daily aims to raise awareness for the community of approximately 30 million US citizens, made up of over 7,000 varying rare disorder and disease patients that desperately need your resources and help, for the sake of their basic human rights and equality, as well as to encourage every listener to investigate whether or not the...

For Rare Disease Daily #8, yannick-robin explains 16p11.2 Duplication Syndrome.

Rare Disease Daily aims to raise awareness for the community of approximately 30 million US citizens, made up of over 7,000 varying rare disorder and disease patients that desperately need your resources and help, for the sake of their basic human rights and equality, as well as to encourage every listener to investigate whether or not they are rare....

For Rare Disease Daily #7, yannick-robin explains 16p11.2 Deletion Syndrome.

Rare Disease Daily aims to raise awareness for the community of approximately 30 million US citizens, made up of over 7,000 varying rare disorder and disease patients that desperately need your resources and help, for the sake of their basic human rights and equality, as well as to encourage every listener to investigate whether or not they are rare. An...

For Rare Disease Daily #6, yannick-robin explains 15q24 Microdeletion Syndrome.

Rare Disease Daily aims to raise awareness for the community of approximately 30 million US citizens, made up of over 7,000 varying rare disorder and disease patients that desperately need your resources and help, for the sake of their basic human rights and equality, as well as to encourage every listener to investigate whether or not they are rare....

For Rare Disease Daily #5, yannick-robin explains 15q13.3 Microdeletion Syndrome.

Rare Disease Daily aims to raise awareness for the community of approximately 30 million US citizens, made up of over 7,000 varying rare disorder and disease patients that desperately need your resources and help, for the sake of their basic human rights and equality, as well as to encourage every listener to investigate whether or not they ar...