每次點擊

是提高知名度的點擊

我們發佈文章是為了提高警惕性,並幫助為我們社區中的人們提供教育資源。

在社交媒體上與TeachRare聯繫,加入對話,提高意識並支持社區

每一次點擊,喜歡,訂閱都在為我們的使命做出貢獻,幫助我們的事業。 如果您不能捐贈金錢或時間,只需按兩下或關注即可獲得極大的讚賞。 我們生成內容以提高意識並通過教育支援我們的社區。 我們不會通過植入廣告獲利或使用植入廣告。

Overcoming a rare disease and undergoing hip surgery has been a journey, but we are slowing mastering the art of jumping 💪 #perseverance #comebackstronger #ptcanhappenanywhere

In 2024, we plan to join and create more podcasts. The unique long-format discussions offer an authentic voice, unfiltered perspectives, and deeper thought. FIECON Patient Perspective was our latest. It is a privilege to be a part of these platforms that help bring awareness to audiences ...worldwide!

Image for shared link
‎FIECON Patient Perspectives: The patient journey | Aromatic l-amino acid decarboxylase deficiency - AADC on Apple Podcasts

‎Show FIECON Patient Perspectives, Ep The patient journey | Aromatic l-amino acid decarboxylase deficiency - AADC - Feb 28, 2024

podcasts.apple.com

We’re getting closer to achieving our biggest advocacy goal to date
and are committed to getting @fda approval for the gene therapy Upstaza to treat AADC deficiency families in the USA. The United States is our home, but we also believe the FDA is a global leader in healthcare:

Image for shared link
We’re getting closer to achieving our biggest advocacy goal to date

Columnist Richard E. Poulin III looks forward to an FDA ruling on the gene therapy Upstaza, hopefully achieving his goal of an approval.

aadcnews.com

Alexion Pharmaceuticals spotlights #raredisease NMOSD in a short film
Launched on YouTube, Rare Connections in NMOSD seeks to raise #awareness of the film through testimonials of three patients living with the rare inflammatory condition.

Image for shared link
Rare Connections in NMOSD

We asked three people with NMOSD to write a letter about their journey. See what happens when they exchange letters and experience each other's...

www.youtube.com

#Autistic people who received intranasal oxytocin paid greater attention to others’ faces during a cooperative game, evidence that the hormone can address one of autism’s core traits, according to a small 2010 study. Could a nasal spray hold the secrets to treatment for #autism?

Image for shared link
Could a nasal spray hold the secrets to developing a treatment for Autism?

Autistic people who received intranasal oxytocin paid greater attention to others’ faces during a cooperative game, evidence that the hormone can...

teachrare.org

For Megan Pederson, who is battling a rare and painful abdominal disease, Zach Bryan music is an escape and a lifeline. The teen’s musical dreams came true at a recent show in Milwaukee when Bryan handed her his guitar and met Pederson for a VIP visit backstage!

Image for shared link
A teen battling a rare disease had her musical dreams come true

For Megan Pederson, who is battling a rare and painful abdominal disease, Zach Bryan’s music is an escape and a lifeline. The teen’s musical...

www.nbcnews.com

The Association for the Care of Achondroplasia Patients of Taiwan hosted an event at Thai-Chinese International School (TCIS) that featured performances by talented individuals with #achondroplasia. The group traveled to Bangkok to raise awareness and share their perspective with students. Special ...thanks to the Taipei Economic and Cultural Office in Thailand for supporting this initiative 社團法人中華民國軟骨發育不全症病友關懷協會

The Association for the Care of Achondroplasia Patients of Taiwan hosted an event at Thai-Chinese International School (TCIS) that featured performances by talented individuals with #achondroplasia. The group traveled to Bangkok to raise awareness and share their perspective with students. Special ...thanks to the Taipei Economic and Cultural Office in Thailand for supporting this initiative 社團法人中華民國軟骨發育不全症病友關懷協會

Samsung entering the innovative technology marketing of #genetherapy under their group Samsung Bioepis. The company plans to file an IND application for phase 1 clinical trials as they see #raredisease as a niche market with potential: "“Unlike chips, smartphones, and home appliances which ...tend to pay off after investing in research and development, new drug development takes more than 10 years and a significant amount of capital. Furthermore, the success rate is less than 10%"

Image for shared link
Samsung begins new drug development for rare diseases - KED Global

Samsung Bioepis Co., a biosimilar development unit of South Korea’s top conglomerate Samsung Group, has begun its new drug development business ...

www.kedglobal.com