Run for ALD

[AllStripes @_allstripes]

Your loved one can leave a lasting legacy behind for their rare disease community.

[Claudia Gonzaga-Jauregui @cgonzagaj]

Great talk from Taylor Kane @rarelikeher founder of @remember_girls talking about the challenges on awareness & diagnosis of female "carriers" of X-linked conditions, many (most?) of which can present physical manifestations of XL disorders. #RareDiseaseMonth #RareDiseaseDay

[National Organization for Rare Disorders (NORD) @RareDiseases]

Join @Hemophiliafed, @RareDiseases, and @Remember_girls for the Barriers to Diagnosis: Women & X-Linked Diseases webinar on 2/8! The discussion will include similar challenges faced by women with bleeding disorders and other x-linked diseases. More: https://t.co/Ijaj1w0aAh

[AllStripes @_allstripes]

Adrenoleukodystrophy (ALD), like most rare diseases, can impact people and families in many different ways. Olivia, Jon and Ken came together to talk about their experiences with this rare disease. https://t.co/10ovViGFD8

[Michael Diamond @mdiamondapp]

NJ's economy grew 3.7% this summer, ranking fourth nationwide. Professional, science and technical services and finance led the way.

[Remember The Girls @remember_girls]

Remember The Girls is participating in #GivingTuesday! Please if you are able support our mission to advance access and care for X-linked carriers. Our fundraising goal is $1,000! #Gchat https://t.co/JNK6yifqn7

[Genetix Biotherapeutics @genetix_biotx]

#RecodeWhatsNext — How can we recode misconceptions about adrenoleukodystrophy (ALD)?

Rare disease advocate + founder of @remember_girls Taylor Kane (@rarelikeher) encourages those living with ALD to share your personal experiences so you can empower others on their journey.

[AllStripes @_allstripes]

Interested in signing up for the AllStripes ALD research program as a woman with ALD? Here’s how! Please direct any additional questions to [email protected]. https://t.co/5bqO4NmZAn

[AllStripes @_allstripes]

What does it mean to be a carrier of an X-linked disease? Women with X-linked diseases are often considered “carriers” since they have a 50% chance of passing on their genetic variant to their children. In X-linked diseases like #ALD, carriers can also experience symptoms.

[Ran Balicer @RanBalicer]

Israel - updated status:

💉 (graph)

🤧
* ZERO! (0) Covid deaths yesterday
First such day in >1yr!
* ~10 infections /M/d (100-fold drop)
* Hospital Covid wards closing

😷
Masks off in open areas
Schools fully open
Green passes (in high-risk indoor setting)

Vaccines work!

1/2

[AllStripes @_allstripes]

What does it mean to #FightLikeAMother? Kim is taking action to make the future brighter for her son and all other children impacted by SLC6A1.

[AllStripes @_allstripes]

You may have heard of newborn screening, but do you know why it’s so beneficial for the rare disease community? Watch our latest explainer video created by our Project Manager, Angela, to find out! #NewbornScreening #RareDisease #RareDiseaseAwareness

[AllStripes @_allstripes]

Have you heard about the Speeding Therapy Access Today (STAT) Act? At AllStripes, we want to see better, faster treatments for rare conditions and this legislation could make a big difference! Ask your Congressperson to support by heading to https://t.co/j7RUbDaQyV! #STATAct

[New Jersey @NJGov]

delete ur account

[Remember The Girls @remember_girls]

This Monday we needed some motivation! What are you looking forward to this week? We are looking forward to sharing some exciting new events with the RTG community!😉 #Rememberthegirls

[AllStripes @_allstripes]

We are proud to be a supporter of @Firefly_Fund! Firefly Fund is a non-profit organization dedicated to finding treatments for rare, neurodegenerative diseases, starting with Niemann-Pick disease type C. #NPC https://t.co/cCkWR6HXuO

[Horizon @HorizonNews]

In honor of #WomensHistoryMonth, @remember_girls executive director and founder, Taylor Kane, explores the link between her own family history with #raredisease and the stigma that women who are carriers may face in the latest #RAREis post: https://t.co/cZtzgnyDBd.

[AllStripes @_allstripes]

We are continuing our International Women’s Day spotlight series by featuring Charlene, our Director of Patient Operations!

[Aishwarya Arjunan, MS, MPH, CGC,CPH (she/her/hers) @aishuarjun]

So excited and proud of Jennifer Choi for successfully defending her thesis this afternoon! I've had the pleasure of knowing Jenn before she even applied to grad school & it's been amazing to be a part of her journey to GC! #GCChat @NUGCprogram

[Myriad Women's Health @MyrWomensHealth]

In advance of Rare Disease Day, MWH spoke with Taylor Kane, a carrier for x-linked adrenoleukodystrophy, on her thoughts on how carrier screening is a critical tool in guiding care plans. Read the blog here: https://t.co/LE5TF1fxPt
#rarediseaseday #careaboutrare #rarediseases