The RARE Foundation Alliance holds two types of networking events: RARE Leader Meetups and RARE Lunch & Learn.

RARE Leader Meetups seek to connect all RARE Foundation Alliance members and strengthen unique bonds that connect the global rare disease community. These events will focus on educating and empowering Foundation Alliance members, with an emphasis on capacity building education.  Meetups will feature expert panelists and opportunities for members to exchange ideas with one another.

RARE Lunch & Learn is a new benefit introduced to Foundation Alliance members this year that will focus on relevant topics identified by feedback from our current members. Lunch & Learns are an additional opportunity to provide support and education to our members.  Sample topics include research poster presentations and how to expand your organization from volunteers to paid staff.

You can sign up to participate in all of these events, or just choose a few topics you’re interested in. If you have any ideas or suggestions of topics to focus on during these meetups, please feel free to forward your ideas to [email protected]

Thank you to all of our Corporate Alliance members for your support of these events.

Not a RARE Foundation Alliance Member? You can learn more and sign up your organization for free today. 

Upcoming RARE Foundation Alliance Events  

RARE Leader Meetup: How To Write an Effective Grant

Tuesday, August 17 from 12 pm – 1 pm ET 

Register here. After registering, you will receive a confirmation email containing information about joining the meeting.

This interactive webinar will provide you with the basic knowledge and understanding of how to build grants that are responsive to RFPs, how to build a budget, and how to craft a grant application. Additionally, you will learn why grant writing doesn’t end with the hitting the submit button.  We will discuss the importance of stewardship, reporting, grant reconciliation, and the role of after action and feedback on the potential for future funding.    
 
You will learn the main components of any good grant, how to project manage grants from a fundraising perspective, how to build long term funding relationships and how to steward funders. 

 

Speaker: Angela Frelander  | Foundation for Sarcoidosis Research
Angela Frelander joined the Foundation for Sarcoidosis Research in 2017. As the Director of Development, she builds the strategy and directs the organization’s donor relations program and fundraising initiatives. This includes individual giving efforts, major gifts program, fundraising events, annual fundraising campaigns, appeals, and grants management. Angela also builds and cultivates relationships with industry, corporate, and foundation partners while working closely with the Vice President of Research and Strategic Partnerships and the Chief Executive Officer.

Angela has extensive experience in developing and fostering client relationships and business marketing. She is passionate about improving the lives for people living with sarcoidosis as well as working to address health disparities. She holds a Bachelor’s degree in Psychology and a minor in Spanish from North Central College in Naperville, Illinois. Angela lives in Chicago, IL.
 
Speaker: Tricha Shivas | Foundation for Sarcoidosis Research

Tricha Shivas joined the Foundation for Sarcoidosis Research (FSR) in December of 2020. As the Vice President of Research and Strategic Partnerships she works with various stakeholders including individuals living with sarcoidosis and their loved ones, academic researchers, clinicians, industry partners, regulators and policy-makers to advance FSR’s mission to accelerate sarcoidosis research in the search for treatments and a possible cure. In her previous roles, she drove strategic plan development and growth of advocacy, fundraising, outreach, and research programming. She is a collaborative and strategic leader with over 15 years of non-profit results-driven experience. She is passionate about creating diverse, high performance teams that generate impactful outcomes. In her most recent role as Development Director at The Myositis Association, Tricha expanded the organization’s national and international reach through the development of creative programming, marketing, and partnership stewardship and growth. She developed strategic goals emphasizing the improvement of health outcomes, doctor patient communication, and access to treatment for all people living with autoimmune and rare diseases. She collaborated with researchers, clinicians, regulators, and industry partners to identify best practices in clinical care and to advance evidence-based research and drug development. Tricha received her bachelors in American Studies from Albright College and her Masters of Bioethics from University of Pennsylvania. She currently serves on Drexel University’s Health Administration Department Advisory Council. She lives in Virginia with her husband, Daryl, and her dog, Dooley.

 

Save The Date: Future Foundation Alliance Events

August 17th: RARE Leader Meetup

October 26: RARE Leader Meetup

 

Past Events

Aug 3: RARE Lunch & Learn: Using Social Media For Rare Disease Awareness 

July 13: RARE Leader Meetup: Growing Your Organization

June 30: RARE Lunch & Learn: Capacity Building – Moving from volunteers to paid staff