Carrie Ostrea, Rare Disease Advocate

Carrie Ostrea, Rare Disease Advocate Providing information, education, and mentoring to patients, advocates, and nonprofit organization leaders in the rare disease community. Providing information, education, and mentoring to patients, advocates, and organization leaders in the rare disease community.

Nonprofit organization building, awareness and marketing campaigns, volunteer recruitment and management, research and drug development, and social media training.

Operating as usual

Are you a patient, caregiver, or healthcare provider of rare neurological conditions? Complete our survey to help inform...
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

Fantastic conference for those interested in genetics and rare diseases in the Mountain West region! I'm proud to be a m...
08/30/2021
Virtual Genetics Summit: November 9-10, 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.

Great opportunity to learn more about the cultural influences of our tribal communities and interactions with the health...
08/17/2021
Welcome! You are invited to join a webinar: Building Bridges, Connecting Two Worlds. After registering, you will receive a confirmation email about joining the webinar.

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...

"Now, we should apply the lessons learned on a macro-level in the rapid creation of the COVID-19 vaccines to the micro-n...
03/04/2021
Applying Operation Warp Speed to ultra rare diseases

"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.

I'm very excited to share that my experience and career in the rare disease community is evolving, and I have just start...
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.

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.

Job Opportunity:  The Association for Frontotemporal Degeneration is hiring for two new positions - Education Program Ma...
02/18/2021
Education Program Manager

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

https://jobs.smartrecruiters.com/TheAssociationForFrontotemporalDegeneration1/743999733635071-education-program-manager

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...

Please share this important #Telehealth survey with your patient community.
10/07/2020

Please share this important #Telehealth survey with your patient community.

We are helping Family Voices, Inc. (National) get the word out about their: Family #Telehealth Readiness Quiz.

It's just 7 questions; 2 are optional, and it does not ask for any identifying information!
If you are a family with a child with a special health care need- please fill out this survey:

English Version:https://www.surveymonkey.com/r/FamilyReadiness

Spanish Version:https://www.surveymonkey.com/r/FamilyReadiness-ES

09/14/2020
Navigating Pediatric to Adult Health Care: Lost in Transition Workshop

Navigating Pediatric to Adult Health Care: Lost in Transition Workshop

The purpose of this workshop is to bring together experts from various backgrounds and disciplines to explore research areas of high priority for youth regarding needed transition services/support as part of routine care.

Workshop Goals:

- Bring together researchers and clinicians representing a broad range of pediatric diseases and conditions to learn from each other and define the current state of health care transition research

- Use this knowledge and experience from a broad range of conditions to:

· Identify common themes and highlight shared research gaps and opportunities that can complement ongoing disease-specific work across NIH ICOs and collaborating organizations

· Further define the needs of youth with chronic physical/medical cond

https://web.cvent.com/event/1861c38c-e953-4ffa-a0f1-1688840fb295/summary

Navigating Pediatric to Adult Health Care: Lost in Transition Workshop. Online registration by Cvent

The Living with Familial Chylomicronemia Syndrome organization has been working on creating legislation to support rare ...
07/09/2020
The HEART Act

The Living with Familial Chylomicronemia Syndrome organization has been working on creating legislation to support rare disease drug approval within the FDA to help patients get access to treatment. To learn more, please go to http://livingwithfcs.org/the-heart-act

Visit the post for more.

Fantastic topic that we need to have more discussion about.
05/25/2020

Fantastic topic that we need to have more discussion about.

Join us this WEDNESDAY (5/27/20) at 11am PT/noon MT/ 1pm CT/ 2pm ET for our final Facebook Live of this grant cycle as we talk with Dr. Murali from Baylor College of Medicine and Texas Children's Hospital about the #Psychosocial aspects of Living with a #Genetic condition.

The Sibling Support Project is offering online Sibshops to children, age 8-13, who have brothers or sisters with special...
05/22/2020
Virtual Sibshop

The Sibling Support Project is offering online Sibshops to children, age 8-13, who have brothers or sisters with special developmental and health concerns. School-age sibs are invited to join Emily Holl, Director of the Sibling Support Project, for a limited series of online Sibshops. Space is limited. We hope that your child will join us for a super fun, unforgettable experience designed especially for siblings!

Virtual Sibshop The Sibling Support Project, creator of Sibshops, is offering online Sibshops to children, age 8-13, who have brothers or sisters with special developmental and health concerns. School-age sibs are invited to join Emily Holl, Director of the Sibling Support Project, for a limited ser...

* Coming Back October 2020*Join your rare disease friends who "get it" for an interactive conversation about managing li...
05/22/2020

* Coming Back October 2020*

Join your rare disease friends who "get it" for an interactive conversation about managing life right now - real talk, no sugar coating. We will talk about the challenges of managing a rare disease organization in these times while taking care of yourself, your family, and your rare disease patient community. We look forward to everyone joining us to share their thoughts, experiences, and insights.

http://www.ostreaconsulting.com/stayingconnected

No Facebook Live tonight. Our vidcast, RARE UNPLUGGED, is going on a "covidcation" until June as we have some ideas we w...
05/18/2020

No Facebook Live tonight. Our vidcast, RARE UNPLUGGED, is going on a "covidcation" until June as we have some ideas we want to brainstorm over to enhance the show!

If you are interested in being a guest for future episode, send me a message here or email me at [email protected].

The WellMed Charitable Foundation continues their discussion on how to cope during the COVID-19 outbreak, and how to saf...
05/12/2020
Coping with the COVID-19: Issues for Caregivers - WellMed Charitable Foundation

The WellMed Charitable Foundation continues their discussion on how to cope during the COVID-19 outbreak, and how to safely transition into a new normal. Lucy Barylak, MSW and Dr. Elliot Sklar will talk about the most recent updates and issues impacting caregivers, and answer questions on how to stay safe and healthy in these unprecedented times.

Join us as we continue our discussion on how to cope during the COVID-19 outbreak, and how to safely transition into a new normal. Lucy Barylak, MSW and Dr. Elliot Sklar will talk about the most recent updates and issues impacting caregivers, and answer questions on how to stay safe and healthy in t...

05/11/2020
RARE UNPLUGGED: Life in the Age of COVID-19

It's time for the next episode of our RARE UNPLUGGED vidcast with very special guests, Melissa J. Hogan (Project Alive) and Kendall Davis (PRA Health). We discuss the impact of Covid on clinical trials, how the general public views COVID data and science, and how kids are managing two months into this pandemic.

I'm so excited for our next RARE UNPLUGGED vidcast on Monday with Kendall Davis (PRA Health Sciences) and Melissa Hogan ...
05/08/2020

I'm so excited for our next RARE UNPLUGGED vidcast on Monday with Kendall Davis (PRA Health Sciences) and Melissa Hogan (Project Alive)! Be sure to join Andra Dickerson Stratton, Anne Bruns, and I on Monday at 4:30 pm PT / 7:30 pm ET here on Facebook or you can register to interact with us on Zoom at https://us02web.zoom.us/webinar/register/WN_slPlOg4tRqyjxEC7JckyHA

See you Monday!

Great graphic describing valid research vs opinion.  It is very important that each of us educate our friends and rare d...
05/08/2020

Great graphic describing valid research vs opinion. It is very important that each of us educate our friends and rare disease communities on the importance of disseminating true research.

Please participate and share with your #raredisease community.National Institutes of Health (NIH)-supported research sur...
05/07/2020
Research survey for rare disease patients and their families about impacts of COVID‑19

Please participate and share with your #raredisease community.

National Institutes of Health (NIH)-supported research survey to examine impact of COVID-19 on rare diseases community

Why are we doing this research? The novel coronavirus pandemic is impacting people with rare diseases and their families. Those impacts can be related to physical health, emotional health, availability of supplies, access to care, or other problems. Your responses may help researchers understand the...

This is an important topic that affects many of us who have children with IEPs and 504 plans.  Be sure to check out this...
05/06/2020

This is an important topic that affects many of us who have children with IEPs and 504 plans. Be sure to check out this free webinar from Dr. Roseann & Associates featuring one of our own rare rockstars, Piper Paul.

𝐒𝐩𝐞𝐜𝐢𝐚𝐥 𝐄𝐝𝐮𝐜𝐚𝐭𝐢𝐨𝐧 𝐢𝐧 𝐚 𝐏𝐚𝐧𝐝𝐞𝐦𝐢𝐜 𝐐𝐮𝐚𝐫𝐚𝐧𝐭𝐢𝐧𝐞
𝐌𝐚𝐲 𝟏𝟗, 𝟐𝟎𝟐𝟎 - 𝟕 𝐩𝐦 𝐄𝐒𝐓/𝟒𝐩𝐦 𝐏𝐒𝐓

Parents have so many questions about their child’s special education rights and needs in this time of quarantine. Well, GET READY to join Dr. Roseann Capanna-Hodge and attorneys - Pete Wright, Piper Paul, Wayne Steedman, and Jack Robinson who are here to LEAD US TOGETHER through what the laws are and how to best support your child RIGHT NOW.

Pete Wright and these amazing attorneys will answer:
🔹What is the federal law during the COVID-19 quarantine?
🔹What is compensatory education?
🔹How can parents advocate right now?
🔹The importance of data points: The how and why of evaluations and collecting data.

Register soon for this FREE Webinar because it will fill up! 👉 https://bit.ly/2YN515g

***All registrants will receive a copy of the video

#specialeducationlaw #specialeducation #specialneedsmom #specialneedskids #specialneedsfamily

Join us tonight at 4:30 pm PT / 7:30 pm ET for our next episode of RARE UNPLUGGED: Life in the Age of COVID-19 in our ne...
05/04/2020

Join us tonight at 4:30 pm PT / 7:30 pm ET for our next episode of RARE UNPLUGGED: Life in the Age of COVID-19 in our new 30-minute format!

We are so excited to have Daniel DeFabio (Disorder: The Rare Disease Film Festival) and Lisa Bayha Deck (ISurvivor Lisa Deck) join us for a great conversation.

You can watch it here on Facebook Live or you can join us on Zoom by registering at https://us02web.zoom.us/webinar/register/WN_RN6h5BSMQxOQ2YGJIL8HnA

"While the cloud of the global health and financial crisis are weighing on us, the technology we are using as our life l...
04/30/2020
Five Tips for Nonprofits to Avoid Virtual Fatigue

"While the cloud of the global health and financial crisis are weighing on us, the technology we are using as our life line is prompting a new ailment – exhaustion. Now more than ever we must create a robust workplace culture and stronger relationships to retain our humanness." Beth Kanter

It is uncertain exactly when we will be able to work together in our offices, although it is clear that our work will involve primarily digital connections with others for a while longer While the cloud of the global health and financial crisis are weighing on us, the technology we are using as ou

* NEW:  30-minute format *Join your rare disease friends who "get it" for an interactive conversation about managing lif...
04/30/2020

* NEW: 30-minute format *

Join your rare disease friends who "get it" for an interactive conversation about managing life right now - real talk, no sugar coating. We will talk about the challenges of managing a rare disease organization in these times while taking care of yourself, your family, and your rare disease patient community. We look forward to everyone joining us to share their thoughts, experiences, and insights.

http://www.ostreaconsulting.com/stayingconnected

This story is just one example of what is happening to dozens of friends and colleagues in the #raredisease space right ...
04/30/2020
These Kids With Rare Genetic Diseases Were Part Of Research Into New Treatments. The Coronavirus Has Stopped All Of It.

This story is just one example of what is happening to dozens of friends and colleagues in the #raredisease space right now - the COVID-19 pandemic has halted so much in terms of research, patient support, and progress.

It is heartbreaking to see so much momentum come crashing down and how it may affect the kids whose parents are fighting so hard to save their lives.

“All of our labs are shut down, and as a result the precious little time my son has left is being wasted,” said one mother. “So I guess I would say the cost of this is the lives of children.”

04/30/2020
Shaylee Mansfield

This is my husband's little cousin, Shaylee Mansfield. Her mom and dad along with the rest of the family are rockstar advocates for the deaf community. I would love to see more accommodations like captioning for Instagram content for Shaylee, Sheena McFeely, and the many millions who would benefit from it. Please share.

Hello Facebook (owner of Instagram),

For over 30 years, the Deaf and hard of hearing community have fought for captioning on content found in TV, movie theaters, and now, digital media. ⁣Given the current situation with coronavirus, people are relying on technology more than ever. There is an explosion of content being created on social media from posts to stories to live chats. This means MILLIONS of videos are not captioned; therefore, not accessible to over 400 million Deaf and hard of hearing people worldwide!
⁣⁣
Shaylee Mansfield, an eleven-year-old Deaf girl, who loves using Instagram (@shayleemansfield) is seeing this disparity grow exponentially every day. Instead of hoping for this to change, Shaylee is ⁣taking action by urging Instagram to add quality automatic captioning on their platform. This will make it easier for the content creators to caption their content making it fully accessible.
⁣⁣
⁣We need your help with sharing this post by using #Instacaptioning to create a better tomorrow for the Deaf and hard of hearing people. ⁣⁣

Fast Fact: YouTube and Facebook already have automatic captions that content creators can utilize or for consumers to use. While not perfect, it’s a start!

P.S. You can find Shaylee Mansfield on Instagram @ShayleeMansfield to share her post to get Instagram's attention ;)

Special thanks to Sheena McFeely, Manny Johnson, Ivy Mansfield, and Jeremy Lee Stone for their involvement with this video.

#accessibility #Deaf #signlanguage #americansignlanguage #knowledgeispower #instacaptioning #bettertomorrow

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10624 S. Eastern Avenue #A847
Henderson, NV
89052

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My Rare Disease Nonprofit Journey

One of the most fulfilling things for me since our Little Miss Hannah passed away in 2011 was to mentor other patients, families, and organization leaders to create HOPE for their community.

I've had the opportunity to work with over 1000 advocates in our rare disease community as well as hundreds of biotech/pharma partners towards one common goal - change for our future in the rare disease space. Whether that is starting or strengthening a nonprofit or support group, funding science for research, creating awareness and marketing campaigns, bridging connections, or just a shoulder to vent on -- my passion was to help make it happen.

I will be continuing this passion in multiple ways including this page where I will share tidbits, articles, upcoming events, educational opportunities, and more with anyone interested in advocating for the rare disease space. This is a non-biased site, so you will see posts from many different organizations that work to support rare diseases groups, nonprofits, marketing, etc.

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Hi everyone I wish this finds you well and far away from covid19! Take a moment please and fill this survey to help us on a research about Rare Diseases If you want to be a help share this survey as much as you can This means a lot for me Thanks & Kindest Regards #Covid19 #rarediseases #WHO #rare #medicareforall #helpinghand #health #research #help #publichealth #healthcare #share #medicine #digitalhealth #hospitals #rarediseases
Back my kickstarter project and access the song "Justice" before its movie debut! Here's a preview. (Link to kickstarter in comments) https://tinyurl.com/um7qsl8
Not only like it, Love it!
I am wanting to participate in Rare Disease Week on Capital Hill this coming February and was wondering if any of you have any resources for getting sponsored to go or helping with the cost of the trip. I have applied for the EveryLife Foundation travel stipend but it will only be for $800 if I get chosen. 4 night hotel stay, plane ticket, food, etc. will likely cost be about $2000. I am looking for any and all other possible funding opportunities to apply for so if anyone has any suggestions please pass them along. I just can't afford to go without financial support because we live paycheck to paycheck.
Hey, West Coast advocates!!! I've got out my medical foods megaphone, proud to announce WHAT'S NEW FOR PKU?! CELEBRATE PEOPLE!!!!!! AS OF OCTOBER 2017, IT IS OFFICIAL - I RECEIVED MY LETTER TO BACK UP THIS BREAKING NEWS IN THE HEIGHT OF NATIONAL PHARMACISTS MONTH, THE Rx BENEFIT FOR MEDICAL FOOD HAS BEEN REINSTATED AT THE FEDERAL POLICY LEVEL!!!!!!!!!! EFFECTIVE JANUARY 2018 I'M BACK IN BUSINESS, BABY!!!!! MEDICAL FOOD AS PHARMACY BENEFIT FOR PKU ADULT FEDERAL EMPLOYEES - 80$ COPAY VIA MAIL ORDER X90 DAYS!!!! I'M CELEBRATING THIS DEC 3 NATIONAL PKU AWARENESS DAY - LET'S GO VIRAL PEOPLE! START SHARING THE NEWS SEE www.fepblue.org/whatsnew for more
FRIENDS OF CARRIE, please help. I think Carrie & her family are amazing and do incredible work through the Little Miss Hannah Foundation. Carrie deserves to be nominated for this contest at SeaQuest but I am an employee. If Carrie has touched your life please use this link to nominator her. (needs to be done soon) https://www.facebook.com/SeaQuestVegas/
Hillary Clinton‏Verified account @HillaryClinton If you're waiting for the right moment to call your Senator about Trumpcare, the moment is now. Don't wait until it's too late. 202-224-3121
Did you know, there's a PKU uprising taking shape on the Hill? Two years ago to this day - that's me doing my thing in the height of PKU awareness month telling my story. On May 19, 2015 - just days later, my life story took a different course of action. The US federal government suddenly cut off my lifeline to PKU treatment. Two years later - the fight has escalated. I filed formal complaint earlier this year against CareFirst BCBS corporate office, the local carrier to the "Federal Plan" and member to larger coalition, the Blue Cross Blue Shield Association. The response just came in this week and they stuck their attorneys on me. This is a fight I do not intend to lose and I want your support. Please help, it happened to me and it can happen to you. I chose to fight so my kids (all non PKU) aren't left with this nightmare of a sad history and repeated chain of events that my mother went through in the early 1970s when I was a child and now continue to this day. I need support (and an army). Consider contacting Congress now: call, email or come in person to DC lobby days May 22 and May 23 for medical foods nutrition and equity. Give them my name, tell your story. No person that is victim to such blatant discrimination, manipulation and unethical and prohibited unlawful practices by the wily hands of the US federal government and BCBS contracted negotiations should have to endure this or be left behind. I have children, too and the best gift any mother can give this mother's day is the gift of life. I value mine. Please help.