I have had the opportunity to work with over 1000 rare disease advocates and hundreds of biotech/pharmaceutical industry professionals. Working with those who are just as passionate as I am about making progress towards treatment, care, and hope is very rewarding. Here are just a few of the recommendations I have received – click here to read more
Executive Director of the Cystinosis Research Network
Carrie planned and executed three regional patient meetings for the cystinosis community for the Cystinosis Research Network in 2018. She is an rare advocacy and organizational expert, well versed in the challenges faced by rare disease groups. She provided seamless budget development, location coordination, agenda development and speaker engagement, registration set up and marketing outreach and communications guidance. Meetings were set in Houston, Indianapolis and Charleston and were executed flawlessly and efficiently, with the added bonus of Carrie’s willingness to share her knowledge as a patient advocate trainer with our community at each meeting. I would wholeheartedly recommend Carrie in the capacity and further, CRN plans to work with her on a variety of future projects.
Matt Might, PhD
Chief Scientific Officer of NGLY1.org
Carrie is the most dynamic and engaged strategist and leader in the rare disease community. Carrie is known and respected across the entire rare disease space for her insight, her compassion, her hard work, her ability to bring people together and her results. Carrie plans and executes with a precision and effectiveness that makes her a unique and valuable member of any organization. I have been extremely fortunate to have worked with Carrie in her capacity as executive director of a non-profit I co-founded (NGLY1.org). She has truly excelled in this role, facing, managing and mitigating every challenge we’ve faced, while simultaneously finding and exploring every opportunity. She has not only managed patient engagement and support for the foundation, but she has also actively managed a successful drug development collaboration with a major industrial partner and NIH. It is safe to say that all of the success at NGLY1.org — and its continued viability as a going concern — is due to her leadership. Carrie is a uniquely capable and dynamic leader, and I could not recommend anyone more highly.
Executive Director of the International WAGR Syndrome Foundation
When our rare disease nonprofit organization, the Int’l WAGR Syndrome Association, needed professional assistance to reorganize and restructure for the future, we hired Carrie Ostrea to help facilitate and create our Strategic Plan. Carrie’s incredible combination of experience and passion was obvious every step of the way, as was her ability to help us determine where we wanted to go and who we wanted to be. Carrie worked with us to create the formal roadmap for our future, addressing each of our concerns, strengths, and challenges. We now have a focused, detailed Strategic Plan to follow as well as the knowledge and motivation we needed to move our organization to the next level. We are so pleased with our Strategic Plan project that we are now working with Carrie on creating our Strategic Fundraising Plan.
Board of Directors – Alport Syndrome Foundation
The Alport Syndrome Foundation engaged Carrie to guide us through our Strategic Planning process and facilitate an in-person planning session for our Board of Directors — it was well worth it. She was thoughtful and organized throughout, not to mention a pleasure to work with. Most importantly, she was very skilled at guiding our board through some growing pains as we move from a small, volunteer-based organization to a medium-size professional one. Indeed, Carrie didn’t just bring general consulting skills to the table, but also very specific knowledge of the rare-disease non-profit space that will help us with certain initiatives. We’re looking forward to continuing to work with Carrie in the future.
President of the National Gaucher Foundation of Canada
I would highly recommend the services of Carrie Ostrea. Our organization, the National Gaucher Foundation of Canada hired Carrie to help us create a strategic plan. Carrie was extremely efficient, knowledgeable and focused, she helped us create a road map for our way forward. Carrie is extremely adept at navigating the rare disease world. Carrie is very engaging and definitely motivated us to implement the changes she suggested.
President at Curing Retinal Blindness Foundation
Carrie didn’t just help my organization to move forward – she ignited my team to grow and to soar! Carrie worked with my team members and me independently and together to get everyone on one page, focusing on their individual talents and interests while creating a big picture of collective impact. I highly recommend that organizations big and small, new and veteran, consult with Carrie to take a new, more efficient approach to maximizing the team efforts.
Rare Disease Advocate – Public Speaker
Carrie is an incredible leader and mentor. As a leader she helped us create a plan of action for our foundation to take it to the next level and exceed our goals. Her compassion and drive for the rare disease community is beyond measure- she always goes the extra mile to make sure that everything is taken care of and all needs are met. As a mentor she helped take me from a parent advocate to an Executive Director within just a few short years. Her experience and insight helped me to understand the community, the industry and how to become a better rare disease advocate.
Kelly Trout, RN, BSN
Board of Directors at International WAGR Syndrome Foundation
Carrie Ostrea has a unique set of skills. She has a stellar background in business, a broad experience with nonprofit organizations, and a personal passion for the rare disease community. My small nonprofit was struggling – we knew we could reach a new level of effectiveness, but nothing we tried really worked. Hiring Carrie to guide us was the smartest thing we’ve ever done. She started by conducting a comprehensive evaluation of every aspect of our organization, from interviewing every leader and assessing our organizational structure, to reviewing our website, newsletter, and publications.
Her recommendations were so spot-on that we are implementing virtually every one of them. Our whole team has been transformed. The road map that Carrie helped us to create for our organization is empowering, motivating, and already successful beyond our hopes. We are so excited about the future now, because Carrie showed us exactly how to get there.
Chris Moen, M.D.
President of the Choroideremia Research Foundation
Our organization, the Choroideremia Research Foundation, brought Carrie Ostrea in to look at our current operating structure and help to identify changes that could help us grow stronger and more effective. Carrie was extremely thorough in communicating with our leadership team to identify our strengths and weaknesses. She put together a comprehensive action plan for our Board of Directors to review and utilize as our new operating structure. Carrie was always available for questions via email and phone throughout this process. She is extremely personable and professional both in her individual discussions as well as her presentation to our Board. Carrie truly seems passionate about her work; it felt as if she was invested in our success as an organization.
We’re now four months past our engagement with Carrie and have already begun to reap the benefits of her experience and recommendations. I would strongly recommend Carrie to other small non-profit organizations like ours who are looking to make a jump in their fundraising, patient engagement, or other activities.