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I hope you can find an answer and a treatment that works (that is also affordable and with few negative side effects). :hug

As the month draws to a close, I would like to thank everyone who participated in the discussion- especially our friends who shared their experiences of living with a rare disease. :grouphug: Thank you to everyone who showed support and compassion to our experiences. Please keep supporting...

Thank you :hug Nora has done so many things the doctors said she never would do. Doctors told her parents that she would never be able to laugh, but they have shared videos of Nora giggling on Facebook. For people who are local to the St. Louis, MO area there is a fundraising raffle going on...

Nora Jane Foundation NJA > NKH This week, we’re sharing the story of a fierce little girl who loves jamming out to Metallica and continues to defy the odds every day. Nora was born on July 4, 2016 after a normal pregnancy and delivery. She didn’t cry like many babies, but the nurses assured...

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For this week's post, we are sharing a post written by @Alora Sionn about her journey with granulomatosis with polyangiitis (GPA). Thank you for sharing, Alora. :hug Granulomatosis with polyangiitis (GPA) GPA (formerly called Wegener’s disease) is in the vasculitis family of diseases. It’s...

I'm glad that there are medications out there to help keep it under control, and also that it isn't severe.

Wow, that is very lucky. :hug It sounds extremely uncomfortable and craptastic from the description. Are there any treatments that can prevent permanent vision loss?

I’m so glad your doctor was on top of the diagnosis and that you have a partner who supports you! :hug

:hug Welcome to the club I guess? As I was researching this I didn’t even think about how I could be in the club also. https://ojrd.biomedcentral.com/articles/10.1186/1750-1172-1-9 I mostly wanted to bring more attention to the general cause and share the story of my cousin’s daughter, Nora...

Rare Disease Day Rare Disease Day was created in 2008 and is observed on February 28th, or February 29th in a leap year. This celebration is a global movement to advocate for equity in diagnosis, therapies, treatment, healthcare, and social opportunity for people living with rare diseases...