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: Implementation of Project ECHO (Extension of Community Healthcare Outcomes, an initiative of the University of Mexico)

You are invited to a Zoom meeting.
When: Oct 26, 2021 04:00 PM Eastern Time (US and Canada)

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

Democratising complex rare disease knowledge from the minds of often city-centric experts to the minds of practitioners and leaders at the front line where that knowledge is needed most is a challenging task. The International Prader Willi Syndrome Organisation (IPWSO), with the financial backing of Pfizer Inc, have established numerous Project ECHO’s (Extension of Community Healthcare Outcomes, an initiative of the University of Mexico) to deliver expert knowledge to doctors, allied health professionals and advocates, working in their local communities where the people with Prader-Willi syndrome are living.

This technology enabled ‘all teach, all learn’ program enables online communities of practice to meet regularly for didactic presentations and case study discussions. James O’Brien will reveal how IPWSO has established, delivered and evaluated numerous international IPWSO ECHO’s involving ‘hub’ experts and ‘spoke’ learners from more than 70 countries.

Speaker: James O’Brien  | International Prader Willi Syndrome Organisation

James O’BrienMr. James O’Brien is Vice President of the International Prader Willi Syndrome Organisation and Chair of Prader Willi Syndrome Australia. Other volunteer roles include Council Member of Global Genes RARE Global Leadership Advocacy Council and Director of the PWS Better Living Foundation. James’ work in disability was recognised by the Churchill Trust, when he was granted a Churchill Fellowship in 2017, and his education, management and operating experience spans national and international research, specialist schools, specialist accommodation and disability services. James’ love for his two children including his son Ashley (27yo living with PWS) drives his powerful desire to establish PWSA education, advocacy and support services across Australia and around the globe for people living with Prader-Willi syndrome.

Past Events

Aug 17: RARE Leader Meetup: How To Write an Effective Grant

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