We are a catalyst to educate, engage and equip the rare disease community to achieve enhanced quality of life and accelerate diagnosis and enabling access to treatments. We initiate and coordinate alliances with public and private institutions to achieve a future where rare diseases are rapidly diagnosed, understood and treated.
So how do we help our community? We do this by injecting patient voices at the heart of all initiatives. We have proven success ensuring successful launch of policy creation so all patients receive life saving therapies and enhanced quality of life.
By providing customized tool kits we are ensuring each state’s individual needs are addressed. NC RDII also provides training on the necessity of the patient voice in health policy, renewing evidence on the impact of disease on person and society, developing evidence-based advocacy strategies and identifying best practices on leveraing media. We also develop and implement clinical and patient rare disease education programs. By supporting access that would improve the quality of life, we find that is the best opportunity to inject the patient voice.
Built on the Foundation of Success:
North Carolina Rare Disease Advisory Council
3/25/15: Legislative breakfast to propose legislation to create NC Rare Disease Advisory Council hosted By Taylor’s Tale Foundation
4/14/15: Legislation filed in General Assembly, HB823
7/29/15: Legislation ratified by General Assembly
8/05/15: Billed signed into law
12/1/15: Appointments to council confirmed by NC DHHS Secretary
1/26/16: First NC Rare Disease Advisory Council meeting
Rare Disease Innovations Institute, Inc. is pleased to announce the appointment of Ms. Susan Nichols as Chair of the Board for this non-profit.
Susan is currently CEO of Falcon Therapeutics. Susan has a proven executive management track record and over twenty years of corporate management and leadership experience in high growth biotech, entering the cell therapy arena in 2010. Susan brings a unique perspective having served in global executive management roles with early stage , emerging, and fortune 500 companies such as Invetech, Baebies, Thermo Fisher/ASI and Hitachi Chemical, She developed and oversaw partnerships with pharmaceutical companies and life science companies to advance drug development and the manufacturing platforms that enable commercial success. Susan was able to shepherd scale-up efforts of cell therapies through all phases of clinical trials and into commercialization. In support of early stage Life Science companies, she successfully established funding relationships with VC’s, Private Investment Groups, Angel Investors, Philanthropic Alliances, Non-traditional Financing, Royalty Deals, Licensing Opportunities, and Strategic Alliances.
“We are excited to work with Susan in this leadership role and are thrilled with the skill sets she brings,” stated Tara Britt, Founder and President of the non-profit.
Tara J. Britt, President of RDII, Named in 11 Most Influential Women in Advanced Therapies
Celebrating women in advanced therapies…
It’s important for our industry to inspire and attract female talent and to value the contribution of women in science if we’re going to achieve gender parity. It’s promising that we’ve seen women being awarded the Nobel Prize in Science, Chemistry and Medicine four times in the last six years. It’s progress, albeit slow.As Sheryl Sandberg famously said, “you cannot be what you cannot see…”
So, for all the women and girls looking towards the advanced therapies industry, and even the wider STEM industry, here are 11 of the most influential women in advanced therapies today.Thanks to all who helped to put this together, including Jana Stoudemire, Delfi Krishna and Sara Mills who are also mentors and leaders in the W.O.M.E.N mentoring programme.
Here’s your list:
1. Tara Britt
2. Jennifer Doudna
3. Maria Fardis, PhD, MBA
4. Catriona Jamieson
5. Jeanne Loring
6. Martina Schussler-Lenz
7. Christi Shaw
8. Emily Whitehead Foundation
9. Samantha Z. Yammine, PhD
10. Ran Zheng
11. Claudia Zylberberg
See the full story below!!
RDII Participating in The 2020 Rare Fair
WHAT IS THE RARE FAIR?
The Rare Fair is the only 100% virtual, 100% inclusive event for the rare disease community. When you join us at The Rare Fair, you can log on from anywhere in the world to enjoy unprecedented access to this global event.
Our virtual event operates exactly like a traditional health fair with keynote speakers in a dedicated theater, breakout rooms, an exhibitor hall, networking rooms, scavenger hunts, breakout tracks, scheduled demos in our exhibit hall, gamification, and patient education resources. Among this year’s offerings include a new 1:1 meeting scheduling platform allowing attendees to connect via text, audio, or video channels. This year we will also present two panel discussions on Industry Partnerships and Caregiver Resources.
At The Rare Fair, patients and caregivers can network directly with physicians, medical providers, non-profit organizations, and other rare stakeholders. Our goal is to bring together the best rare resources available so attendees can add those resources to their own diagnosis management network.
This year’s theme is #EverybodysIn as we encourage all rare patients to share their stories, challenges, and triumphs. Join us for The Rare Fair on September 1-2, 2020, and tell your story.
On the last day of the event we will be drawing for three $100 Visa gift cards. Anyone who has purchased a patient or caregiver ticket is eligible to win on the last day of the fair!
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