Way to go, Dan! Congrats for running the Marine Corps Marathon and raising $50,000 for Alport Syndrome Foundation! Together with other families like yours, we're working to change the stories and outcomes for individuals living with Alport syndrome. We appreciate your dedication. Empowered rare disease families are changing the world. For more information?about our rare kidney disease and our Annual Campaign, visit?alportsyndrome.org
Alport Syndrome Foundation
非盈利组织
Scottsdale，Arizona 531 位关注者
Improving patient lives through education, empowerment, advocacy, and research with a vision to conquer Alport syndrome.
关于我们
Our mission is to improve the lives of those affected by Alport Syndrome through education, empowerment, advocacy, and direct investment in research. ABOUT ALPORT SYNDROME Alport Syndrome is a rare genetic kidney disease that causes a decline in kidney function that often leads to kidney failure and need for transplant, hearing loss, eye conditions, and other complications. There is no cure for Alport syndrome, and no treatment proven to prevent the development of kidney failure. Early diagnosis is essential as there are medications to delay disease progression. The majority of the Foundation's resources are directed to research to find treatments and/or a cure, including the collection of human data through sponsoring its own patient registry in the United States and other natural history data including patient bio samples. The Alport Syndrome Foundation (ASF) is the leading independent nonprofit organization in the United States serving and giving a voice to the Alport syndrome community of patients and families. For more information, visit www.alportsyndrome.org.
- 网站
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https://www.alportsyndrome.org
Alport Syndrome Foundation的外部链接
- 所属行业
- 非盈利组织
- 规模
- 2-10 人
- 总部
- Scottsdale，Arizona
- 类型
- 非营利机构
- 创立
- 2007
- 领域
- Patient Education and Advocacy、Clinical Practice Guidelines、Professional Education、Support Community、Research Funding、Kidney Disease、Alport Syndrome Awareness、Kidney Health、genetic disease、rare disease和hearing loss
地点
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主要
获取路线
P.O. Box 4130
US，Arizona，Scottsdale，85261
Alport Syndrome Foundation员工
动态
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Way to go, Dan! Congrats for running the Marine Corps Marathon and raising $50,000 for Alport Syndrome Foundation! Together with other families like yours, we're working to change the stories and outcomes for individuals living with Alport syndrome. We appreciate your dedication. Empowered rare disease families are changing the world. For more information?about our rare kidney disease and our Annual Campaign, visit?alportsyndrome.org
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ASF has almost 9,000 members, primarily individuals & families living with this rare kidney disease. Six years ago, there were 2 companies investing in clinical trials in Alport syndrome - today ASF is working with 30 companies in various stages of exploring preclinical and clinical studies that include Alport patients. Working together to educate and empower patients, and invest in research and human data collection, ASF is helping shape a HOPEFUL landscape for treatment or a cure. EVERYTHING we do is FREE, and we want to keep it that way. Our educational resources, events, programs, and membership. Our 2024 Annual Campaign runs Oct 8 - 31st. Visit us at this link to learn more about patient stories, what ASF means to our members, and to support our work. https://lnkd.in/g_7nR6ad
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ASF would like to thank the attendees, sponsors, guest speakers, and volunteers who made Alport Connect Denver a wonderful event. We are pleased to share that 100% of adult and teen attendees who evaluated the event would recommend Alport Connect to other patients and families. If you would like to view more photos from the event,?please see our Alport Connect Meetings page: https://lnkd.in/eYBi5iZ5 "?????? ?????????? ???????? ???????? ?????? ????????????'?? ???? ?????????????? ???????? ?????? ???????????? ???????????????????? ?????? ??????????????????. ?????????? ??????!" "???? ?????? ?????? ???? ???????? ????????????????... ???? ???????? ?????? ?????????????? ???? ??????????????, ???????????????? ????????????, ?????????????? ??????????????, ?????? ???? ???????? ?????????????????????? ?????????????? ???????????????? ?????? ?????? ?????????????????? ???????????? ???? ?? ?????????? ???? ?????????? ?????? ??????????????." "?? ?????????????? ???????? ???????? ?? ??????????. ???????????????? ???????? ???? ??????????????!" “?????????? ?????? ?????? ?????????? ?? ???????????? ???? ???????? ???? ?? ?????????? ???????? ?????????????????? ???? ???????? ????????.”
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ENYO Pharma is very pleased to announce the start of its Alport syndrome clinical trial “ALPESTRIA-1” with the first site opened for patient recruitment in Idaho (US). ?? The ALPESTRIA-1 study is a Phase 2 clinical study evaluating the safety, tolerability and benefit of three dose levels of the investigational drug Vonafexor on renal function and biomarkers in patients with Alport syndrome. The study aims to recruit 20 patients in the US and EU (France, Spain and Germany). ?? Vonafexor is a clinical-stage?compound with strong fibrolytic & anti-inflammatory effects already shown in the Phase 2 LIVIFY study and in various preclinical studies in Alport syndrome and severe Chronic Kidney Disease (CKD). Vonafexor has been administered to over 300 individuals in 9 clinical studies. ???? Alport syndrome is a rare kidney disease, a genetic disorder affecting 1 in 5,000-10,000 births. It is characterized by a progressive loss of kidney function. To date, no cure is available for patients suffering from Alport syndrome. ? For more information about the study, please visit: ENYO Pharma: https://lnkd.in/eUJkvbDa Clinicaltrialsgov: https://lnkd.in/ecGjCDUU ASF: https://lnkd.in/etE2h77r We deeply thank all the involved stakeholders for their great work and support. #alportsyndrome #clinicaltrial #kidneydisease #drugdevelopment
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As a #raredisease, #Alportsyndrome is commonly misdiagnosed. Genetic testing is a powerful tool for accurate diagnosis, which can unlock access to treatments, clinical trial opportunities, and ways to connect with the larger community of patients and families. For more information, visit alportsyndrome.org. #RareDiseaseDay
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ASF’s patient and family meeting,?Alport Connect, is returning in person in 2024. We wanted to let our community know the dates and location as soon as possible so you can plan to join us in Colorado this summer! Additional details about this year’s event, including the venue, lodging options, and ticket reservations, will be made available in the coming weeks. We have prepared a 2-minute, closed-captioned recap video of last year’s Alport Connect event so you can see what it meant for so many patients and families to be together in person: https://lnkd.in/eEq4vrDS
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