ASXL Rare Research Endowment Foundation

ASXL Rare Research Endowment Foundation

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The ARRE Foundation is a family-led organization that supports research to increase the understanding of the ASXL gene family and to improve care for those living with Bohring-Opitz, Shashi-Pena and Bainbridge-Ropers Syndromes.

Part 2: Caregiver well-being workshop with Abigail Moretti, MA

41:14

Part 2: Caregiver well-being workshop with Abigail Moretti, MA

2 часа назад

Understanding cortical visual impairment (CVI) - 2024 ASXL Family Conference

36:52

Understanding cortical visual impairment (CVI) - 2024 ASXL Family Conference

19 часов назад

Care for developmental & behavioral issues related to GI health in neurodevelopmental disabilities

43:39

Care for developmental & behavioral issues related to GI health in neurodevelopmental disabilities

19 часов назад

Strategies to assess & manage challenging behaviors - 2024 ASXL Family Conference

43:29

Strategies to assess & manage challenging behaviors - 2024 ASXL Family Conference

19 часов назад

Q&A Session - 2024 ASXL Research Symposium and Family Conference

21:28

Q&A Session - 2024 ASXL Research Symposium and Family Conference

19 часов назад

Understanding the ASXL genes - 2024 ASXL Family Conference

19:38

Understanding the ASXL genes - 2024 ASXL Family Conference

19 часов назад

ARRE Foundation mission and updates - 2024 ASXL Family Conference

15:12

ARRE Foundation mission and updates - 2024 ASXL Family Conference

19 часов назад

Managing sleep disruptions - 2024 ASXL Family Conference

58:15

Managing sleep disruptions - 2024 ASXL Family Conference

19 часов назад

Engaging complex and palliative care in your child's care team - 2024 ASXL Family Conference

42:14

Engaging complex and palliative care in your child's care team - 2024 ASXL Family Conference

19 часов назад

Conference closing: Where do we go from here? - 2024 ASXL Family Conference

7:39

Conference closing: Where do we go from here? - 2024 ASXL Family Conference

19 часов назад

How the ASXL community is preparing for clinical trials - 2024 ASXL Family Conference

44:07

How the ASXL community is preparing for clinical trials - 2024 ASXL Family Conference

19 часов назад

Thank you for supporting the 2024 ASXL Research Symposium and Family Conference!

1:32

Thank you for supporting the 2024 ASXL Research Symposium and Family Conference!

День назад

2024 ASXL Family Conference - Attendee orientation

58:26

2024 ASXL Family Conference - Attendee orientation

Месяц назад

Caregiver well-being: Roundtable discussion

57:40

Caregiver well-being: Roundtable discussion

Месяц назад

About the 2024 ASXL Family Conference scholarship program

7:36

About the 2024 ASXL Family Conference scholarship program

5 месяцев назад

Funding announcement: $50,000 investment in ASXL Registry and Biobank

1:34

Funding announcement: $50,000 investment in ASXL Registry and Biobank

7 месяцев назад

2023: An unprecedented year of progress in the ASXL community

1:15

2023: An unprecedented year of progress in the ASXL community

7 месяцев назад

Funding announcement: $5,000 pilot grant to support ASXL3 treatments

2:16

Funding announcement: $5,000 pilot grant to support ASXL3 treatments

8 месяцев назад

Funding announcement: $60,000 investment in ASXL antibodies

1:53

Funding announcement: $60,000 investment in ASXL antibodies

8 месяцев назад

Fireside chat: Updates from the ARRE Foundation with Laura Badmaev and Amanda Johnson

27:17

Fireside chat: Updates from the ARRE Foundation with Laura Badmaev and Amanda Johnson

8 месяцев назад

Welcome to the ASXL-related disorder community

1:01

Welcome to the ASXL-related disorder community

8 месяцев назад

Sharing the results of the ASXL Puberty Survey

53:36

Sharing the results of the ASXL Puberty Survey

9 месяцев назад

GivingTuesday information session and tutorial

23:29

GivingTuesday information session and tutorial

9 месяцев назад

How to: Create a Facebook Fundraiser for GivingTuesday

5:58

How to: Create a Facebook Fundraiser for GivingTuesday

9 месяцев назад

How to: Create a personal fundraising page for GivingTuesday

10:39

How to: Create a personal fundraising page for GivingTuesday

9 месяцев назад

Kidney abnormalities in genetic conditions with Dr. Michael Rauchman

55:04

Kidney abnormalities in genetic conditions with Dr. Michael Rauchman

10 месяцев назад

ASXL3/Bainbridge-Ropers Syndrome family updates with Dr. Meena Balasubramanian

57:53

ASXL3/Bainbridge-Ropers Syndrome family updates with Dr. Meena Balasubramanian

Год назад

Urinary incontinence: From toilet training to medical intervention

42:23

Urinary incontinence: From toilet training to medical intervention

Год назад

Communication: tools, methods, and strategies for all abilities

59:04

Communication: tools, methods, and strategies for all abilities

Год назад

Комментарии

@SteffaniRedinger 6 дней назад

The event was absolutely lovely and meeting everyone in person was such a comforting connection! We are so thankful!

@drroopadeevihosamani6195 12 дней назад

Email address for communication plz

@vincenzoschettini5031 7 месяцев назад

'promosm' 🌈

@nannukk 8 месяцев назад

You rock guys!!!! I've made a new fundraiser with about +/- 1500$!!! Hope it helps... :)

@nannukk 8 месяцев назад

Huge news, huge thanks for everything!!! We hope that we could find a treatment asap... :)

@nannukk 8 месяцев назад

Thanks Laura and Amanda for the amazing work, these informations are so relevant!!! I wish I could do more... And I will try to! ;)

@reneebeverly1151 8 месяцев назад

I wish you wasn’t talking so fast

@kaiaiony9099 8 месяцев назад

Change the speed

@maisacarqueija82 Год назад

Sou do Brasil 🇧🇷 , meu filho foi diaguinosticado com essa síndrome 😢, hoje ele tem 11 anos , gostaria de saber mais , ele faz acompanhamento no hospital das clinicas com neuro geneticista...

@arrefoundation Год назад

Please email us at info@arrefoundation.org and we can connect you to some additional information!

@morrisdonald8795 Год назад

All thanks to #DrObahistoricalherbsvy on RU-vid who cure me from epilepsy virus to I'm free thank you once again Dr you are the best on RU-vid

@morrisdonald8795 Год назад

All thanks to #DrObahistoricalherbsvy on RU-vid who cure me from epilepsy virus to I'm free thank you once again Dr you are the best on RU-vid

@anniewilson6737 3 года назад

Thank you so much for the much needed information....

@EstranieroEstranio 3 года назад

Thank you!