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December 2021

Otsuka America Pharmaceutical’s ADPKD Peer Conversations Webinar: ADPKD and Your Everyday Life

December 6 @ 6:30 pm - 7:30 pm

ADPKD Peer Conversations: ADPKD and Your Everyday Life Monday, December 6, 2021, 6:30 PM ADPKD Peer Conversations is a series of webinars that provides an interactive experience for participants. In each webinar, participants will be able to discuss topics ranging from diagnosis to starting treatment with other ADPKD patients and caregivers to those with ADPKD. Each webinar will provide participants with the opportunity to connect with other members of the ADPKD community in their region through interactive Q&As and helpful…

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Otsuka America Pharmaceutical’s ADPKD Peer Conversations Webinar: ADPKD and Your Everyday Life

December 7 @ 5:30 pm - 6:30 pm

ADPKD Peer Conversations: ADPKD and Your Everyday Life Tuesday, December 7, 2021, 5:30 PM ADPKD Peer Conversations is a series of webinars that provides an interactive experience for participants. In each webinar, participants will be able to discuss topics ranging from diagnosis to starting treatment with other ADPKD patients and caregivers to those with ADPKD. Each webinar will provide participants with the opportunity to connect with other members of the ADPKD community in their region through interactive Q&As and helpful…

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Otsuka America Pharmaceutical’s ADPKD Peer Conversations Webinar: ADPKD and Your Everyday Life

December 8 @ 5:30 pm - 6:30 pm

ADPKD Peer Conversations: ADPKD and Your Everyday Life Wednesday, December 8, 2021, 5:30 PM ADPKD Peer Conversations is a series of webinars that provides an interactive experience for participants. In each webinar, participants will be able to discuss topics ranging from diagnosis to starting treatment with other ADPKD patients and caregivers to those with ADPKD. Each webinar will provide participants with the opportunity to connect with other members of the ADPKD community in their region through interactive Q&As and helpful…

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Angel Aid Cares’ Rare Mother Meetup

December 8 @ 6:00 pm - 7:00 pm

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.

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Alexion Pharmaceuticals, Inc.’s Managing Your PNH Webinar

December 9 @ 6:30 pm - 7:30 pm

Managing Your PNH Connect. Learn. Take Action. December 9, 2021, 6:30 PM Connecting patients and caregivers in the paroxysmal nocturnal hemoglobinuria (PNH) community. To register, click here. Acknowledgment: This event post is sponsored by Alexion Pharmaceuticals and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant, vetted and valuable information to the rare disease community.

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The Oley Foundation’s Tube Feeding/TPN Support Group for Patients and Caregivers

December 9 @ 6:30 pm - 7:30 pm

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 marywootten.oley@gmail.com to rsvp and for the Zoom link.  

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Otsuka America Pharmaceutical’s ADPKD Peer Conversations Webinar: ADPKD and Your Everyday Life

December 9 @ 7:00 pm - 8:00 pm

ADPKD Peer Conversations: ADPKD and Your Everyday Life Thursday, December 9, 2021, 7:00 PM ADPKD Peer Conversations is a series of webinars that provides an interactive experience for participants. In each webinar, participants will be able to discuss topics ranging from diagnosis to starting treatment with other ADPKD patients and caregivers to those with ADPKD. Each webinar will provide participants with the opportunity to connect with other members of the ADPKD community in their region through interactive Q&As and helpful…

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January 2022

Angel Aid Cares’ Rare Mother Meetup

January 12, 2022 @ 6:00 pm - 7:00 pm

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.

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The Oley Foundation’s Tube Feeding/TPN Support Group for Patients and Caregivers

January 13, 2022 @ 6:30 pm - 7:30 pm

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 marywootten.oley@gmail.com to rsvp and for the Zoom link.

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The Oley Foundation’s Kidz Klub Virtual Meeting

January 20, 2022 @ 6:30 pm - 7:30 pm

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…

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February 2022

Angel Aid Cares’ Rare Mother Meetup

February 9, 2022 @ 6:00 pm - 7:00 pm

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.

Find out more »

The Oley Foundation’s Tube Feeding/TPN Support Group for Patients and Caregivers

February 10, 2022 @ 6:30 pm - 7:30 pm

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 marywootten.oley@gmail.com to rsvp and for the Zoom link.

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March 2022

The Oley Foundation’s Tube Feeding/TPN Support Group for Patients and Caregivers

March 10, 2022 @ 6:30 pm - 7:30 pm

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 marywootten.oley@gmail.com to rsvp and for the Zoom link.

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The Oley Foundation’s Kidz Klub Virtual Meeting

March 24, 2022 @ 6:30 pm - 7:30 pm

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…

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April 2022

The Oley Foundation’s Tube Feeding/TPN Support Group for Patients and Caregivers

April 14, 2022 @ 6:30 pm - 7:30 pm

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, April 14, 2022, 6:30 PM EST. Please email Mary at marywootten.oley@gmail.com to rsvp and for the Zoom link.

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May 2022

The Oley Foundation’s Tube Feeding/TPN Support Group for Patients and Caregivers

May 12, 2022 @ 6:30 pm - 7:30 pm

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, May 12, 2022, 6:30 PM EST. Please email Mary at marywootten.oley@gmail.com to rsvp and for the Zoom link.

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June 2022

HCU Network America, Organic Acidemia Association, and Propionic Acidemia Foundation’s 2021 Conference

June 26, 2022 - June 27, 2022
Bethesda Marriott, 5151 Pooks Hill Rd
Bethesda, MD 20814 United States
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HCU Network America, Organic Acidemia Association, and Propionic Acidemia Foundation's "LAND OF THE FREE, HOME OF THE BRAVE" 2021 Conference June 2022 The Land of the Free, Home of the Brave, 2021 Conference will serve as a chance for patients, patient families, caregivers, and medical professionals to converge and learn about the latest research related to acidemia and homocystinuria, as well as the newest advancements in treatment. Attendees will have the opportunity to support one another and help build community.…

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