Carrie Ostrea, Rare Disease Advocate

09/17/2023

m looking forward to catching up with my rare family and friends at the Global Genes summit this year! Also excited to meet the new-to-me advocate and industry rockstars that are making a difference in our community. See you all very soon!

11/01/2022

IQVIA Patient Advocacy Summit: Helping Nonprofit Organizations Support Patients Through Advocacy-Led Research and Data Initiatives

The IQVIA Institute for Human Data Science is hosting its second annual Patient Advocacy Summit on Wednesday, November 16, from 10 am – 3 pm EDT. This virtual event will convene patient advocacy organizations to engage in thought-provoking conversations around relevant and timely patient-driven research and health data topics. The Summit is intended to be an interactive forum for leaders and stakeholders across the global patient advocacy and healthcare research community. Speakers will include patients, caregivers, and thought leaders eager to explore solutions to the most pressing challenges limiting organizations seeking to improve patient outcomes. Register here.

https://www.events.iqvia.com/event/8e8e3f79-4e12-42f9-ab0d-0f2c21e58eaf/summary?utm_source=Rare%20Diseases%20Clinical%20Research%20Network&utm_campaign=1f06910ff3-WEEKLY_UPDATE_11_01_2022&utm_medium=email&utm_term=0_bfaa0fd897-1f06910ff3-202948145

01/07/2022

It's time for our 2022 Vegas Cares About Rare Kids 5K - IN PERSON! We would love to grow our Team Little Miss Hannah and whether you participate in person or virtually, we'd love to have you with us. If you aren't able to participate, please consider donating to help us continue Hannah's legacy to rare kids.

It's been a hard couple of years for us due to COVID, but we have still continued our streak of providing medical and therapy equipment for every valid application for the past 6 years!

https://runsignup.com/Race/NV/Henderson/VegasCaresAboutRare

The 2022 Vegas Cares About Rare Kids 5K/1M Charity Race is on Saturday February 12, 2022. It includes the following events: 5K - Timed, 5K - Untimed, 1M Walk, and 5K/1M Virtual.

09/08/2021

Are you a patient, caregiver, or healthcare provider of rare neurological conditions? Complete our survey to help inform our new PIE4CNS initiative, addressing critical gaps in identifying, diagnosing, and developing treatments for rare neurological conditions.

Are you a patient, caregiver, or healthcare provider of rare neurological conditions? Complete our survey to help inform our new PIE4CNS initiative, addressing critical gaps in identifying, diagnosing, and developing treatments for rare neurological conditions.

Complete the survey now: https://bit.ly/GGCNS2021

08/30/2021

Fantastic conference for those interested in genetics and rare diseases in the Mountain West region! I'm proud to be a member of the Nevada team of the Mountain States Regional Genetics Network.

A virtual summit to educate, engage, and connect families, providers, and public health professionals around contemporary topics in genetics.

08/17/2021

Great opportunity to learn more about the cultural influences of our tribal communities and interactions with the healthcare system. Free webinar.

In this session, tribal history is discussed, tribal cultural awareness, and cultural considerations when delivering service. Related to these topics, we will also be exploring variances within tribal members/communities and how to be culturally sensitive and appropriate in cross cultural situations...

04/30/2021

This is fantastic news!!

03/04/2021

"Now, we should apply the lessons learned on a macro-level in the rapid creation of the COVID-19 vaccines to the micro-numbers of treatments required for children born with ultra-rare genetic diseases. These kids deserve our focus."

We should apply the lessons learned on a macro-level in the rapid creation of the COVID-19 vaccines to the micro-numbers of treatments required for children born with ultra-rare genetic diseases. These kids deserve our focus.

02/24/2021

I'm very excited to share that my experience and career in the rare disease community is evolving, and I have just started a new position in biotech with Passage Bio as their new Associate Director of Patient Advocacy! I love that I get to focus on gene therapy treatments for diseases that are in the same family as Hannah's disease (lysosomal storage diseases) as well as work closely with UPenn’s Gene Therapy Program.

Although I will no longer be consulting professionally in the rare disease space, I will always be available to mentor and brainstorm with those who I have come to know and care for in this community over the past 10 years.

02/18/2021

Job Opportunity: The Association for Frontotemporal Degeneration is hiring for two new positions - Education Program Manager and Director of Research Engagement

Company Description: We are the leading organization dedicated to ending the most common form of dementia under 60, known as FTD. We help families affected today, and drive research to bring hope for the future.AFTD was founded by a volunteer in 2002. Empowering families to bring about change and ma...

02/01/2021

Job Opportunity: Cure GM1 Foundation is hiring an Outreach and Program Coordinator. For more details, please visit

GM1 Gangliosidosis, an inherited lysosomal storage disorder damages nerve cells in the brain & spinal cord. DONATE NOW to help find a cure to this disease.