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เป็นการคลิกเพื่อการรับรู้

เราโพสต์บทความเพื่อเพิ่มความตื่นตระหนกและเพื่อช่วยจัดหาแหล่งข้อมูลการศึกษาให้กับผู้ที่อยู่ในชุมชนของเรา

เชื่อมต่อกับ TeachRare บนโซเชียลมีเดียเข้าร่วมการสนทนาสร้างความตระหนักและสนับสนุนชุมชน

ทุกการคลิกเช่นสมัครสมาชิกมีส่วนช่วยในภารกิจของเราและช่วยงานของเรา หากคุณไม่สามารถบริจาคเงินหรือเวลาได้การคลิกหรือติดตามง่ายๆจะได้รับการชื่นชมอย่างมาก เราสร้างเนื้อหาเพื่อสร้างความตระหนักและสนับสนุนชุมชนของเราด้วยการศึกษา เราไม่สร้างรายได้หรือใช้ตําแหน่งการจัดวางผลิตภัณฑ์

We found a baby bird in our garden and returned it to its nest near our bathroom, hoping its mom would return. When we checked later, it was hungry, so we whipped up some egg yolk for it. After feeding, it finally fell asleep peacefully. #WildlifeRescue #BabyBird #NatureLove #AnimalCare ...#babybirdrescue #babybirdsnest

Congresswoman Jennifer Wexton of #Virginia, who will not seek re-election due to her diagnosis with Progressive Supranuclear Palsy, Type-P (PSP-P), has released a video using #AI to restore her original voice.

Elected in 2022, Wexton has faced significant challenges communicating due to ...her condition, which is a rare form of Atypical Parkinsonism. In the video, she explains that AI technology from ElevenLabs created a new voice model from old speech clips, enabling her to sound like she did before her diagnosis.

Wexton expressed hope that this technology can empower others facing similar health and accessibility challenges. She acknowledged the potential dangers of AI but emphasized its transformative possibilities for people with disabilities.

Wexton’s office pays a subscription fee for the AI service, and she controls who on her staff can access the AI tool to prevent misuse. Despite her diagnosis, Wexton remains committed to her work and advocates for disability rights.

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Dem Congresswoman Now Only Speaks Via AI-Generated Voice After Being Diagnosed With Rare Disease

A member of Congress with a rare disease is using artificial intelligence to be able to "speak" her mind once again.

www.westernjournal.com

Feeling blessed with my amazing husband who not only takes great care of our daughter but also shares precious moments playing with her. 💖 #Blessed #FamilyLove #ParentingGoals #besthusbandever #bestdaddy #playingislearning #daddydaughtertime #daddysgirl #daddysgirlforever

Part 2 of Rylae’s diagnostic journey. 🌟 Stay tuned for updates! #MedicalMystery #HealthJourney #sickkids #PatientStories #ChronicIllness #DiagnosisInProgress #Healthcare #MedicalTests #NeverGiveUp #medicalparenting #familyfirst #raredisease #babygirl #specialneedsfamily #shortclip ...#reallifestories #specialneedsmom

A team of researchers from the @um_radyfhs and Children's Hospital Research Institute of Manitoba is playing a leading role in RareKids-CAN: Pediatric Rare Disease Clinical Trials and Treatment Network, a national initiative to enhance research and treatment for rare diseases in children.
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This initiative has received $20 million in funding from the Canadian Institutes of Health Research as part of #Canada 2021 national strategy for #raredisease drugs.

The initiative aims to provide essential infrastructure for children with rare diseases to participate in clinical trials closer to home, addressing the gap between diagnostic capabilities and access to treatments.

It brings together leaders in clinical trials, pharmacology, drug development, and data analysis, with a strong emphasis on incorporating the patient’s voice in the strategy.

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National network to accelerate research for rare diseases in kids

A group of researchers from the Rady Faculty of Health Sciences and Children’s Hospital Research Institute of Manitoba (CHRIM) has leadership roles...

news.umanitoba.ca

Part 1 of Rylae’s diagnostic journey. 🌟 Stay tuned for updates! #MedicalMystery #HealthJourney #PatientStories #ChronicIllness #DiagnosisInProgress #Healthcare #MedicalTests #NeverGiveUp #medicalparenting #familyfirst #raredisease #babygirl #specialneedsfamily #shortclip

Our daughter was born with a rare genetic condition called #AADC deficiency. She had a high fever for several days which we thought it was a cold. However, when she didn’t eat or drink for 2 days we rushed her to the ER where she was admitted to the ICU. The fear of loosing her was overwhelming, ...especially when the doctors informed us about her collapsed lungs and #pneumonia. We are incredibly grateful to the doctors at National University hospital in Singapore whose expertise saved her life. @nuhig #aadcdeficiency #iculife #singaporehospital #gratefulparents #medicalmiracle #thankyoudoctorsandnurses❤️

Researchers at the UAB - The University of Alabama at Birmingham have completed a successful Phase 2 #clinicaltrial of a new drug, NNZ-2591, for treating #pitthopkins syndrome (PTHS), a severe neurodevelopmental #raredisease caused by a mutation in the TCF4 gene on chromosome 18.

This ...disorder leads to #autism like symptoms, intellectual disability, speech and motor impairments, and other medical and behavioral issues.

There are no currently approved treatments for #PTHS, but this landmark drug trial has shown, but this landmark drug trial shows promising results!

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Landmark drug trial shows promising results for Pitt-Hopkins syndrome

This devastating neurodevelopmental disorder has no currently approved treatments.

www.uab.edu

This amazing @jenxltd stander help Rylae to stand. By using this stander she was able to do many activities like reading! #jenxltd #specialneeds #dislocatedhip #aadcdeficiency

A couple in #India, is facing a daunting challenge as their child has been diagnosed with a #raredisease, leaving them helpless due to the exorbitant treatment cost of nearly $2,000 USD per injection.

Spinal Muscular Atrophy #SMA has severely impacted Hitaishi's health, requiring ...specialized medical care that the family cannot afford. The couple is seeking financial assistance from various sources to fund their child's treatment and provide hope for a better future.

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Rare Genetic Disease in Child Renders Guntur Couple Helpless, One Injection Costs Rs 16 Crore - News18

Hitaishi was diagnosed with Spinal Muscular Atrophy (SMA), a severe genetic condition affecting the spine, which inhibits motor neuron function...

www.news18.com

The first missing tooth is a time to celebrate years of work. A joyous milestone achieved after sensitivity to symptoms of AADC deficiency. The #toothfairy made it to us even though we were traveling.

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The first missing tooth is a time to celebrate years of work

Columnist Richard E. Poulin III and his family celebrate his daughter's first missing tooth and a visit from the tooth fairy.

aadcnews.com
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