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Rare Disease Day

Home » Rare Disease Day
Read more about the article aHUS what is really happening?

aHUS what is really happening?

  • Post author:Len Woodward
  • Post published:January 21, 2023
  • Post category:Featured/News
  • Post comments:0 Comments

Listening to some aHUS people on social media there is a sense that all are not satisfied with what is happening…

Continue ReadingaHUS what is really happening?
Read more about the article Rare Disease Day 2023- aHUS Community Project

Rare Disease Day 2023- aHUS Community Project

  • Post author:Linda Burke
  • Post published:January 8, 2023
  • Post category:Featured
  • Post comments:0 Comments

On February 28, 2023, the world will join together to raise awareness for rare diseases like atypical HUS. Recognized annually on…

Continue ReadingRare Disease Day 2023- aHUS Community Project
Read more about the article That was the aHUS Rare Disease Day Video that was

That was the aHUS Rare Disease Day Video that was

  • Post author:Len Woodward
  • Post published:May 20, 2022
  • Post category:Featured
  • Post comments:0 Comments

65 questions, 29 article blogs with answers to the questions published between 7 March and 16 May and over 300 views…

Continue ReadingThat was the aHUS Rare Disease Day Video that was
Read more about the article RD Day 2022: aHUS Webinar hosted by AKF

RD Day 2022: aHUS Webinar hosted by AKF

  • Post author:Linda Burke
  • Post published:February 12, 2022
  • Post category:Uncategorized
  • Post comments:0 Comments

In honor of this year's Rare Disease Day on February 28, the American Kidney Fund (AKF) will be hosting “Rare Disease…

Continue ReadingRD Day 2022: aHUS Webinar hosted by AKF
Read more about the article aHUS Project for 2022 Rare Disease Day

aHUS Project for 2022 Rare Disease Day

  • Post author:ahusalliance
  • Post published:December 29, 2021
  • Post category:Uncategorized
  • Post comments:0 Comments

Rare Disease Day 2022: aHUS Alliance Global Action to mark the day with a patient-centered video that focuses on questions posed by those affected by the rare disease atypical HUS.

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Read more about the article Global aHUS Action for 2021 Rare Disease Day

Global aHUS Action for 2021 Rare Disease Day

  • Post author:ahusalliance
  • Post published:January 5, 2021
  • Post category:Featured
  • Post comments:0 Comments

    aHUS Alliance Global Action, update - On 28 February 2021 our slideshow launched, featuring 107 very special people from…

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Read more about the article aHUS project for Rare Disease Day 2020

aHUS project for Rare Disease Day 2020

  • Post author:ahusalliance
  • Post published:January 2, 2020
  • Post category:Featured
  • Post comments:0 Comments

Atypical HUS: 2020 Rare Disease Day project by the aHUS Alliance. What do aHUS patients & family caregivers ‘see’ as needs for improvement or envision as future advancements for aHUS through 2020?

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Read more about the article Rare Disease Day:  Atypical HUS in 2020

Rare Disease Day:  Atypical HUS in 2020

  • Post author:ahusalliance
  • Post published:December 7, 2019
  • Post category:Uncategorized
  • Post comments:0 Comments

Article No. 302 7 December 2019     Rare Disease Day Looking Ahead:  What Atypical HUS Community Sees for 2020  …

Continue ReadingRare Disease Day:  Atypical HUS in 2020
Read more about the article No one said it would be easy

No one said it would be easy

  • Post author:ahusalliance
  • Post published:January 27, 2019
  • Post category:Featured
  • Post comments:0 Comments

The reluctant advocate story continues: aHUSUK had received the Evaluation Consideration Document the week before Rare Disease Day 2014 and we…

Continue ReadingNo one said it would be easy
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