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June 2021

The Immune Deficiency Foundation’s National Primary Immunodeficiency Conference

June 23 - June 26

The Primary Immunodeficiency Conference June 23-26, 2021 This conference is the largest primary immunodeficiency (PI) patient gathering on Earth. Patients, clinicians, and caregivers will come together for this virtual event dedicated to community, education, and awareness surrounding primary immunodeficiency. For more info on this event, click here. To register for the conference, click here.

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National Organization for Rare Disorders’ Living Rare, Living Stronger Patient and Family Forum

June 26 - June 28
$39

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…

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July 2021

The GRIN2B Foundation’s 2021 GRIN2B Family Weekend

July 9 - July 10
Hyatt Regency O’Hare, 9300 W Bryn Mawr Ave
Rosemont, IL 60018 United States
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$85

2021 GRIN2B Family Weekend July 9-10, 2021 This event is open to patients and families affected by GRIN2b-related neurodevelopmental disorder and related diseases. The weekend will be focused on building community, education, and providing families with critical support and resources. For registration and travel info, click here.

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Angel Aid Cares’ Rare Mother Meetup

July 14 @ 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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Cystinosis Research Network’s 2021 Summer Online Conference

July 15 - July 19

The 2021 CRN Summer Online Conference "The Beat Goes On" July 15-19, 2021 While this event was originally slated to take place in person in Nashville, TN, in light of the ongoing COVID-19 pandemic, the conference will now occur online. This is in the interest of the safety and health of the cystinosis community. Don't miss the event as it is a vital opportunity for education, community support, and fun. For more information about this event, click here.

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Alagille Syndrome Alliance’s 9th International Symposium

July 16 - July 17

The 9th International Symposium on Alagille Syndrome "The Alagille Trail" July 16-17, 2021 The Alagille Syndrome Alliance is Discovering New Paths and Leaving No Stone Unturned at their 9th annual symposium in 2021. This year's event will be fully virtual in light of the ongoing COVID-19 pandemic. This year's event is presented by Mirum Pharmaceuticals and Albireo Pharma and is sponsored by Travere Therapeutics. The virtual platform will feature interactive booths and virtual lounges that will allow participants to connect…

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The MDS Foundation’s Webcast de MDS en Español

July 17 @ 12:00 pm - 1:00 pm

Que son los sindromes mielodisplasicos? Guillermo Montalbán Bravo, MD, MD Anderson Cancer Center Este seminario les va a proveer como se determina el diagnóstico de MDS, se estará enfocando en los subtipos y la manifestación de MDS. Comprendiendo el diagnostico de MDS y los detalles de los diferentes tratamientos, y las respuestas a las preguntas más comunes serán desarrolladas. Avances en el tratamiento de los sindromes mielodisplasicos.  Guillermo Garcia-Manero, MD, MD Anderson Cancer Center Además, estaremos proveyendo los tratamientos y…

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August 2021

The MDS Foundation’s Outcomes for High-Risk MDS Patients Undergoing Transplant vs. Standard Non-Transplant Therapies Webinar

August 7 @ 12:00 pm - 1:00 pm

Outcomes for High-Risk MDS Patients Undergoing Transplant vs. Standard Non-Transplant Therapies August 7, 2021 Speaker: Erica D. Warlick, MD, University of Minnesota Medical Center This free webinar provides an overview of allogeneic hematopoietic cell transplant as a treatment for high-risk MDS. This approach will be compared with other common treatment approaches, such as hypomethylating agents and other novel agents. To register, click here.

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Angel Aid Cares’ Rare Mother Meetup

August 11 @ 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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SynGAP Research Fund’s Interpretation of Variants in SYNGAP1

August 19 @ 10:00 am - 11:00 am

Interpretation of Variants in SYNGAP1 August 19, 2021 with Eduardo Pérez Palma, PhD This webinar will feature a discussion of research related to genetic variants in SYNGAP1. Click here to sign up.

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September 2021

Angel Aid Cares’ Rare Mother Meetup

September 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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October 2021

Angel Aid Cares’ Rare Mother Meetup

October 13 @ 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 MDS Foundation’s CAR T Cell Therapy in MDS/AML Webinar

October 16 @ 12:00 pm - 1:00 pm

CAR T Cell Therapy in MDS/AML October 16, 2021 Speaker: David A. Sallman, MD, Moffitt Cancer Center This informational webinar will focus on a treatment approach called CAR T-cell therapy, a procedure in which the patient's own T-cells are extracted and modified in order to attack cancer. Learn about the latest advances in this form of treatment and the implications for people living with AML and MDS. To register, click here.

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November 2021

Angel Aid Cares’ Rare Mother Meetup

November 10 @ 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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December 2021

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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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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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.

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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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