It's time to turn the tide!

To bring about a dramatic and wide reaching change in conditions and attitudes for the rare disease community.

To bring about a dramatic and wide reaching change in conditions and attitudes for the rare disease community.

Digital Spotlights

A closer look at the history and science of thyroid eye disease

18 November 2023

Digital Spotlights

Caring for people with thyroid eye disease: a healthcare professional’s experience

18 November 2023

Digital Spotlights

Layla Lohmann’s unpredictable journey living with thyroid eye disease

18 November 2023

Digital Spotlights

The work of patient advocacy organisations supporting people with thyroid eye disease

18 November 2023

Digital Spotlights

Travelling a long road with Graves’ disease and thyroid eye disease (TED): a care partner’s perspective

18 November 2023

Science & tech

The Undiagnosed Diseases Network’s mission to eradicate the diagnostic odyssey: an interview with Sarah Marshall

By admin

6 December 2023

A day in the life

A day in the life: a medically complex condition that is as unpredictable as the weather

By admin

29 November 2023

Charity & advocacy

Thoughts into Action: What is quality of life as defined by people living with inherited metabolic disorders?

By admin

22 November 2023

Press releases

CureDuchenne raises more than $1.3 million at ninth annual Napa in Newport to help find a cure for Duchenne muscular dystrophy

By admin

16 November 2023

Charity & advocacy

Shining a light on Smith-Magenis syndrome

By admin

15 November 2023

Science & tech

What is a flare in Sjögren’s? TREND Community’s innovative use of artificial intelligence to find answers for the community

By admin

8 November 2023

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@rarerevolutionmagazine

rarerevolutionmagazine

Frank Marshall is the husband of Christine Gustafs

Frank Marshall is the husband of Christine Gustafson, who lives with Graves’ disease and thyroid eye disease (TED). He has been Christine’s companion on her long journey, from the start of her mysterious symptoms to her dual diagnosis, from her challenging surgeries to the present day. From his perspective as a care partner, he is sharing his insights into living with compromised vision.

https://rarerevolutionmagazine.com/digitalspotlight/travelling-a-long-road-with-graves-disease-and-thyroid-eye-disease-ted-a-care-partners-perspective/

#ThyroidEyeDisease #TED #GravesDisease #RareDisease #Ophthalmology #Autoimmune

Thank you for joining us today and thank you to @R

Thank you for joining us today and thank you to @RareRevolutionM for giving us a platform to share more about ALD! Please visit our website and follow us on social media @aldconnect to stay involved in the fight for ALD. @aldconnect

ALD Connect recently celebrated our 10th anniversa

ALD Connect recently celebrated our 10th anniversary. It is incredible to see how far we have come in 10 years and we had a great opportunity to reflect on this at our Annual Meeting last month. Presentation recordings will be uploaded to our YouTube channel https://www.youtube.com/. @aldconnect

ALD Connect has many resources for individuals and

ALD Connect has many resources for individuals and families with ALD. Our Peer Mentor Program and Community Calls aim to offer support through commonality. You can check out the recorded webinars on our website for additional resources https://aldconnect.org/get-involved/ @aldconnect

Newborn screening is imperative in the fight for A

Newborn screening is imperative in the fight for ALD. Early diagnosis saves lives. Currently only 38 states screen for ALD. #newbornscreening @aldconnect

Adrenoleukodystrophy (ALD) affects approximately 1

Adrenoleukodystrophy (ALD) affects approximately 1 in 17,000 people worldwide. There is currently no cure for ALD and symptoms vary depending on phenotype. When diagnosed early, individuals with ALD can be monitored for progression of symptoms and treated appropriately. Visit our website to learn more https://aldconnect.org/what-is-ald/ @aldconnect

ALD Connect is very excited to participate in #tak

ALD Connect is very excited to participate in #takeovertuesday and a big thank you to @RareRevolutionM for this opportunity! Today, you will learn about adrenoleukodystrophy (ALD) and the great community we have. Please visit our website https://aldconnect.org for more information!
@aldconnect

This is your last chance to submit applications to

This is your last chance to submit applications to Action for XP. Could you be the new Operations Officer, or Fundraising and Events Officer?

Flexible home working, with part-time hours and an opportunity to do a job that makes a big difference, while working with a passionate volunteer team!

Find out more at https://bit.ly/40Wga1m

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