Rare Disease Day

“A Window into Rare” a Rare Disease Day Panel Discussion

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Join our Rare Disease Day virtual panel discussion as BioNews columnists from a variety of our rare communities participate in a lively conversation with fellow patient advocate Liza Bernstein. This window into often overlooked aspects of life with a rare disease will provide a variety of patient perspectives. Topics will include awareness and advocacy, equity, mental health, empowerment, and more. We invite everyone to join us for this signature event and look forward to your participation in the Q and A!

Panelists:

Paris Dancy, Columnist, Cushing’s Disease News
Michelle Gonzaba, Columnist, Myasthenia Gravis News
Claire Richmond, Columnist, Porphyria News
Sherry Toh, Columnist, SMA News Today

Hosted by Liza Bernstein, Patient Advocate & Sr. Director Patient & Community Engagement

Feb 28, 2022 02:00 PM in Central Time (US and Canada)

Register at https://us06web.zoom.us/webinar/register/WN_dylme0wBRCyH8TfQ7B6x-w

📅 Rare Disease Day 2019

MaryO Cushing’s Help, message boards , , , , ,

rare disease day

What am I doing for Rare Disease Day?

For me, it’s more that one day out of the year. Each and every day since 1987,  I tell anyone who will listen about Cushing’s.  I pass out a LOT Cushing’s business cards and brochures.

My husband also passes out cards and brochures.

Adding to websites, blogs and more which I have maintained continuously since 2000 – at mostly my own expense.

Posting on the Cushing’s Help message boards about Rare Disease Day.  I post there most every day.

Tweeting/retweeting info about Cushing’s and Rare Disease Day today.

Adding info to one of my blogs about Cushing’s and Rare Disease Day.

Adding new and Golden Oldies bios to another blog, again most every day.

Thinking about getting the next Cushing’s Awareness Blogging Challenge set up for April…and will anyone else participate?

And updating https://www.facebook.com/CushingsInfo with a bunch of info today (and every day!)

~~~

Why am I so passionate about Rare Disease Day?

I had Cushing’s Disease due to a pituitary tumor. I was told to diet, told to take antidepressants and told that it was all my fault that I was so fat. My pituitary surgery in 1987 was a “success” but I still deal with the aftereffects of Cushing’s and of the surgery itself.

I also had another Rare Disease – Kidney Cancer, rare in younger, non-smoking women.

And then, there’s the adrenal insufficiency…

And growth hormone deficiency…

If you’re interested, you can read my bio here: https://cushingsbios.com/2018/10/28/maryo-pituitary-bio/

What are YOU doing for Rare Disease Day?

 

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🎬 The 2018 Rare Disease Day video!

MaryO Interviews, Meetings and Conferences ,

 

Show you’re rare. Show you care.

This year’s video features patients and family members, researchers and doctors who show they’re rare. The video shows the wide range of people involved in the rare disease cause and together, with your support they can be a strong voice for greater progress in research of rare diseases.

Read stories of the stars of the video – 5-year-old Enzo, who is living with congenital myasthenic syndrome, Yara, a rare disease researcher, Annie, who is living with leber hereditary optic neuropathy, Alexandre, who is living with Fibrodysplasia ossificans progressiva, and his father Antoine. Thank you also to Zoé, who lives with Congenital myasthenic syndrome, Sylvain a doctor who has experience with diagnosis of rare diseases and Mirina who is living with Ehler-Danlos… biographies coming soon!

Share this video on social media and with your friends and family to help show your solidarity with those living with rare disease and spread the word about Rare Disease Day, 28 February 2018!

📅 Rare Disease Day

MaryO Cushing’s Help, message boards , , , , ,

rare disease day

What am I doing for Rare Disease Day?

For me, it’s more that one day out of the year. Each and every day since 1987,  I tell anyone who will listen about Cushing’s.  I pass out a LOT Cushing’s business cards and brochures.

Adding to websites, blogs and more that I have maintained continuously since 2000 – at mostly my own expense.

Posting on the Cushing’s Help message boards about Rare Disease Day.  I post there most every day.

Tweeting/retweeting info about Cushing’s and Rare Disease Day today.

Adding info to one of my blogs about Cushing’s and Rare Disease Day.

Adding new and Golden Oldies bios to another blog, again most every day.

Thinking about getting the next Cushing’s Awareness Blogging Challenge set up for April…and will anyone else participate?

And updating https://www.facebook.com/CushingsInfo with a bunch of info today (and every day!)

~~~

Why am I so passionate about Rare Disease Day?

I had Cushing’s Disease due to a pituitary tumor. I was told to diet, told to take antidepressants and told that it was all my fault that I was so fat. My pituitary surgery in 1987 was a “success” but I still deal with the aftereffects of Cushing’s and of the surgery itself.

I also had another Rare Disease – Kidney Cancer, rare in younger, non-smoking women.

And then, there’s the adrenal insufficiency…

And growth hormone deficiency…

If you’re interested, you can read my bio here https://cushingsbios.com/2013/04/29/maryo-pituitary-bio/

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki