We are honored for Michele Rayes to be part of the #RareDisease Drug Development Series, sharing her journey in helping advance a new treatment for hypoPARA. This free, 3-part course from National Organization for Rare Disorders (NORD), FDA, and Critical Path Institute (C-Path) will help patients, caregivers and advocates with everything from navigating natural history studies and FDA processes to clinical trials and how we can use our personal experiences to drive research forward. Register for the course today at https://lnkd.in/gt3Nsv-t and check out Michele in part 3 of the course.
HypoPARAthyroidism Association
非盈利组织
Lemore，CA 615 位关注者
Mission is to improve the lives of people impacted by hypoPARAthyroidism through education, support, research & advocacy
关于我们
We are a non-profit raising awareness for a rare disease HypoPARAthryroidism and bringing change to the lives of those affected
- 网站
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https://hypopara.org
HypoPARAthyroidism Association的外部链接
- 所属行业
- 非盈利组织
- 规模
- 2-10 人
- 总部
- Lemore，CA
- 类型
- 非营利机构
- 创立
- 1995
地点
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主要
获取路线
US，CA，Lemore
HypoPARAthyroidism Association员工
动态
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Do you have a patient that might be a good fit for participating in a clinical trial? Check out this one from MBX Biosciences, Inc. https://lnkd.in/gE4kv-w8
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Ascendis Pharma announced today that Yorvipath product should be available Mid-January. They will begin enrollment in their ASAP (Ascendis Signature Access Program) in December. The ASAP program will help providers and their patients with prescribing and the payor process. Continue to watch our page for more information about how to sign your patients up. Our community is excited for the 1st FDA approved treatment for our disease.
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Do you have a patient who would be interested in participating in a clinical trial for a once weekly injectable? Check out this currently enrolling clinical trial from our partners MBX Biosciences, Inc. https://lnkd.in/gE4kv-w8
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Have you ever thought about helping out a research project? Did you know that the SHINE (Study of Hypoparathyroidism & Its Natural Evolution) study needs HEALTHY PATIENTS too? They need healthy patients as a control group. This is a natural history study so no medication is involved. If you know someone willing to help out please contact Joanna at [email protected] or Dr Rubin at [email protected] They are currently looking for people in the following categories FEMALES in 20's, 40's, 50's and 70's MALES in 30's, 40's and 50's There are also a few slots left for hypoPARA patients.
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We hosted our annual International HypoPARAthyroidism Association conference Nov 2 & 3, 2024. We had over 100 attendees in person and hundreds who joined us online from 15 countries. Key takeaways of this conference included educating the patients to empower them to self-advocate for themselves with their clinicians along with the promise of new treatment options on the horizon. Treatment options are no longer just about treating the calcium but treating the whole disorder to include the parathyroid hormone itself. The clear recognition of this being a parathyroid hormone disorder not just calcium disorder has helped hundreds of patients live a better quality of life.
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We were honored to have some of our favorite BridgeBio employees present at our conference. Spreading awareness about our shared commitment to the importance of genetic testing
We were honored to attend this year's International HypoPARAthyroidism Association (HPA) Annual Patient Conference and connect with patients, caregivers, and advocates dedicated to advancing understanding and support for those living with #hypoparathyroidism. It was inspiring to see the shared commitment to making a difference in #raredisease.
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Thank you MBX Biosciences, Inc.
Our Chief Medical Officer,?Salomon (Sam) Azoulay, M.D., attended the?HypoPARAthyroidism Association’s?International HypoPARAthyroidism Conference this past weekend to share an overview of the Company and MBX-2109, our potential long-acting parathyroid hormone (PTH) peptide prodrug for the treatment of #hypoparathyroidism. ? Check out photos from the conference where we shared how we’re working to redefine patient outcomes and enhance the quality of life for hypoparathyroidism patients everywhere. ? #endocrine
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We are grateful for our partners at MBX Biosciences, Inc. Thank you for giving us the opportunity to spread the word.
Last week, we held a company-wide virtual meeting with?Patty Keating, Executive Director, and?Michele Rayes, Associate Director, of the?HypoPARAthyroidism Association. Patty and Michele shared invaluable insights into the daily realities of living with #hypoparathyroidism. Their perspectives underscored the importance of our work and deepened our commitment to making a difference for patients impacted by this challenging condition. At MBX, our mission is to help people with #endocrine and #metabolic disorders live fuller and healthier lives.??? ??? Learn more about MBX and explore opportunities to join us in pursuit of this mission by visiting our LinkedIn Careers page:?https://bit.ly/3C8NcDc?
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Congratulations to our partners at Septerna on a monumental occasion.
What a monumental day for Septerna! We rang the Nasdaq Opening Bell today in celebration of our #IPO and the start of an exciting new chapter. With our public listing as $SEPN, we’re well positioned to accelerate the development of our GPCR-targeted therapies. This achievement wouldn’t have been possible without the hard work of our talented team, the support of our broad network of partners, and the trust of our investors. Together, we’re dedicated to bringing future medicines to patients! #NASDAQ #OpeningBell #GoingPublic #Biotech #Innovation
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