Rare Mother Meetup 6:00 PM, PST The Rare Mother Meetup will take place on the second Wednesday of each month and is hosted by Rare Mother Ashley Kenny. The meetup is meant as a safe place for Rare Mothers to connect and share with each other. There is no wrong way to participate in the Rare Mother Meetup; join for as long as you wish, with or without video. Click here to sign up.

RARE on the Road 2021: Rare Disease Leadership Tour Virtual Training and Networking: Illinois May 18, 2021 Global Genes and the EveryLife Foundation for Rare Diseases have worked together since 2017 on the RARE on the Road project, serving to develop new leaders in rare disease advocacy and hosting events around the country. At this time the 2021 tour will include an interactive webinar and three virtual, state-specific events. Registration opens in February 2021. For more info, click here.

Rare Mother Meetup 6:00 PM, PST The Rare Mother Meetup will take place on the second Wednesday of each month and is hosted by Rare Mother Ashley Kenny. The meetup is meant as a safe place for Rare Mothers to connect and share with each other. There is no wrong way to participate in the Rare Mother Meetup; join for as long as you wish, with or without video. Click here to sign up.

The 2021 Living Rare, Living Stronger Patient and Family Interactive Virtual Forum Featuring the Rare Impact Awards June 26-28, 2021 This forum is specifically geared to be a patient-centric event. As always, this forum is meant to be a space for the rare disease community to converge for inspiration, education, networking, fun, and hope. The agenda includes sessions in which patients and their families can gain insight and practical tools for living their best lives with rare diseases, with workshops…

RAREsummit21 October 7, 2021 CRDN's RAREsummit21 is designed as a platform for change. This is an opportunity to hear from and engage with the stakeholders that are creating change across the rare disease landscape. Goals of the virtual event include: Raising awareness of rare diseases and their impacts Show examples of patient group collaboration with other stakeholders. Bring rare disease stakeholders together to drive new partnership opportunities. Equip stakeholders with the knowledge and skill to incorporate patients and patient advocates…

Rare Mother Meetup 6:00 PM, PST The Rare Mother Meetup will take place on the second Wednesday of each month and is hosted by Rare Mother Ashley Kenny. The meetup is meant as a safe place for Rare Mothers to connect and share with each other. There is no wrong way to participate in the Rare Mother Meetup; join for as long as you wish, with or without video. Click here to sign up.

Rare Mother Meetup 6:00 PM, PST The Rare Mother Meetup will take place on the second Wednesday of each month and is hosted by Rare Mother Ashley Kenny. The meetup is meant as a safe place for Rare Mothers to connect and share with each other. There is no wrong way to participate in the Rare Mother Meetup; join for as long as you wish, with or without video. Click here to sign up.

Rare Mother Meetup 6:00 PM, PST The Rare Mother Meetup will take place on the second Wednesday of each month and is hosted by Rare Mother Ashley Kenny. The meetup is meant as a safe place for Rare Mothers to connect and share with each other. There is no wrong way to participate in the Rare Mother Meetup; join for as long as you wish, with or without video. Click here to sign up.

Rare Mother Meetup 6:00 PM, PST The Rare Mother Meetup will take place on the second Wednesday of each month and is hosted by Rare Mother Ashley Kenny. The meetup is meant as a safe place for Rare Mothers to connect and share with each other. There is no wrong way to participate in the Rare Mother Meetup; join for as long as you wish, with or without video. Click here to sign up.

Rare Mother Meetup 6:00 PM, PST The Rare Mother Meetup will take place on the second Wednesday of each month and is hosted by Rare Mother Ashley Kenny. The meetup is meant as a safe place for Rare Mothers to connect and share with each other. There is no wrong way to participate in the Rare Mother Meetup; join for as long as you wish, with or without video. Click here to sign up.

Rare Mother Meetup 6:00 PM, PST The Rare Mother Meetup will take place on the second Wednesday of each month and is hosted by Rare Mother Ashley Kenny. The meetup is meant as a safe place for Rare Mothers to connect and share with each other. There is no wrong way to participate in the Rare Mother Meetup; join for as long as you wish, with or without video. Click here to sign up.

Tube Feeding/TPN Virtual Support Group with Mary Wootten, Program Associate We invite you to attend the Oley Tube Feeding/TPN Virtual Support Group for Patients & Caregivers on Thursday, December 9, 2021, 6:30 PM EST. Please email Mary at [email protected] to rsvp and for the Zoom link.  

Rare Mother Meetup 6:00 PM, PST The Rare Mother Meetup will take place on the second Wednesday of each month and is hosted by Rare Mother Ashley Kenny. The meetup is meant as a safe place for Rare Mothers to connect and share with each other. There is no wrong way to participate in the Rare Mother Meetup; join for as long as you wish, with or without video. Click here to sign up.

Tube Feeding/TPN Virtual Support Group with Mary Wootten, Program Associate We invite you to attend the Oley Tube Feeding/TPN Virtual Support Group for Patients & Caregivers on Thursday, January 13, 2022, 6:30 PM EST. Please email Mary at [email protected] to rsvp and for the Zoom link.

Kidz Klub With Mary Wootten, Program Associate Parents and caregivers! We invite you and your children to participate in an Oley Kidz Virtual Zoom meeting on Thursday, January 20, 2022 6:30-7:30 PM EST. The Oley Kidz Virtual Zoom meeting is open to children who are on tube feeding or TPN therapy, their siblings, as well as children and grandchildren of those on therapy. We welcome all children that are touched in any capacity by tube feeding or TPN. To RSVP and…

Rare Mother Meetup 6:00 PM, PST The Rare Mother Meetup will take place on the second Wednesday of each month and is hosted by Rare Mother Ashley Kenny. The meetup is meant as a safe place for Rare Mothers to connect and share with each other. There is no wrong way to participate in the Rare Mother Meetup; join for as long as you wish, with or without video. Click here to sign up.

Tube Feeding/TPN Virtual Support Group with Mary Wootten, Program Associate We invite you to attend the Oley Tube Feeding/TPN Virtual Support Group for Patients & Caregivers on Thursday, February 10, 2022, 6:30 PM EST. Please email Mary at [email protected] to rsvp and for the Zoom link.

Rare Disease Day at NIH Virtual Conference February 28, 2022 Rare Disease Day® takes place worldwide, typically on or near the last day of February each year, to raise awareness among policymakers and the public about rare diseases and their impact on patients’ lives. Each year, NCATS and the NIH Clinical Center sponsor Rare Disease Day at NIH as part of this global observance. Rare Disease Day at NIH aims to raise awareness about rare diseases, the people they affect, and NIH collaborations…

Tube Feeding/TPN Virtual Support Group with Mary Wootten, Program Associate We invite you to attend the Oley Tube Feeding/TPN Virtual Support Group for Patients & Caregivers on Thursday, March 10, 2022, 6:30 PM EST. Please email Mary at [email protected] to rsvp and for the Zoom link.

Kidz Klub With Mary Wootten, Program Associate Parents and caregivers! We invite you and your children to participate in an Oley Kidz Virtual Zoom meeting on Thursday, March 24, 2022 6:30-7:30 PM EST. The Oley Kidz Virtual Zoom meeting is open to children who are on tube feeding or TPN therapy, their siblings, as well as children and grandchildren of those on therapy. We welcome all children that are touched in any capacity by tube feeding or TPN. To RSVP and…