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April 2022
The Oley Foundation’s Tube Feeding/TPN Support Group for Patients and Caregivers
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 [email protected] to rsvp and for the Zoom link.
Find out more »May 2022
The Oley Foundation’s Kidz Klub Virtual Meeting
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, May 5, 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…
Find out more »The Oley Foundation’s Tube Feeding/TPN Support Group for Patients and Caregivers
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 [email protected] to rsvp and for the Zoom link.
Find out more »The Center for Chronic Illness WA State Rare Chronic Illness Support Group
WA State Rare Chronic Illness Support Group A supportive group for WA state residents living with rare health challenges facilitated by Carrie Pope, MSW, LICSW 2nd Friday of each month, 1:30-2:30pm PST This program is currently meeting virtually. Visit www.thecenterforchronicillness.org/groups to sign up for free!
Find out more »June 2022
The Center for Chronic Illness WA State Rare Chronic Illness Support Group
WA State Rare Chronic Illness Support Group A supportive group for WA state residents living with rare health challenges facilitated by Carrie Pope, MSW, LICSW 2nd Friday of each month, 1:30-2:30pm PST This program is currently meeting virtually. Visit www.thecenterforchronicillness.org/groups to sign up for free!
Find out more »July 2022
The Center for Chronic Illness WA State Rare Chronic Illness Support Group
WA State Rare Chronic Illness Support Group A supportive group for WA state residents living with rare health challenges facilitated by Carrie Pope, MSW, LICSW 2nd Friday of each month, 1:30-2:30pm PST This program is currently meeting virtually. Visit www.thecenterforchronicillness.org/groups to sign up for free!
Find out more »August 2022
The Oley Foundation’s Walk, Bike, or Move for Oley! Walkathon
Walk, Bike, or Move for Oley! Walkathon 2022 August-October 2022 Once again, our annual walkathon will be virtual. This year, though, we urge you to gather in your communities—as you are comfortable—and walk, run, bike, hike, or be active in any way you'd like, for as far and as long as you choose! Let us know you are walking and whether you'd like our help in reaching other Oley members in your area. We can help you spread the word! Donations…
Find out more »The Center for Chronic Illness WA State Rare Chronic Illness Support Group
WA State Rare Chronic Illness Support Group A supportive group for WA state residents living with rare health challenges facilitated by Carrie Pope, MSW, LICSW 2nd Friday of each month, 1:30-2:30pm PST This program is currently meeting virtually. Visit www.thecenterforchronicillness.org/groups to sign up for free!
Find out more »September 2022
The Center for Chronic Illness WA State Rare Chronic Illness Support Group
WA State Rare Chronic Illness Support Group A supportive group for WA state residents living with rare health challenges facilitated by Carrie Pope, MSW, LICSW 2nd Friday of each month, 1:30-2:30pm PST This program is currently meeting virtually. Visit www.thecenterforchronicillness.org/groups to sign up for free!
Find out more »October 2022
Danny’s Dose’s Family Education Event: Hot Springs, AR
Danny's Dose Family Education Event: Hot Springs, AR October 1, 2022 EDUCATION: Learn the "STEPS TO PROTECTION" for proper EMERGENCY PREPAREDNESS, "TREATMENT PLANS", working with your EMS/ER Staff, your existing state protocols & more! PLUS - enjoy a day of fun! AGENDA: 10:30 – 11:00: Registration 11:00 – 1:00: Lunch & Fun Time 1:00 – 3:00: Education Sessions & Break 3:00 -- 5:00: Free Time to enjoy the locationVendors will be available throughout the afternoon from…
Find out more »The Center for Chronic Illness WA State Rare Chronic Illness Support Group
WA State Rare Chronic Illness Support Group A supportive group for WA state residents living with rare health challenges facilitated by Carrie Pope, MSW, LICSW 2nd Friday of each month, 1:30-2:30pm PST This program is currently meeting virtually. Visit www.thecenterforchronicillness.org/groups to sign up for free!
Find out more »National Organization for Rare Disorders’ Rare Diseases + Orphan Products Breakthrough Summit
The Rare Diseases + Orphan Products Breakthrough Summit October 17-18, 2022 This year, NORD is thrilled to welcome the rare family and all community stakeholders back together in-person to Washington, DC for the 2022 Rare Diseases and Orphan Products Breakthrough Summit. Join your fellow rare disease leaders from patient advocacy groups, government, industry, and academia for exclusive access to fresh insights, compelling connections, and expert resources. Don’t miss out on #NORDSummit – registration is OPEN now! To get registered, click…
Find out more »World Alliance of Pituitary Organizations’ Webinar: Fighting Against the Global Issue of Substandard and Falsified (SF) Medical Products
Online Webinar: Fighting Against the Global Issue of Substandard (SF) and Falsified Medical Products With Dr. Bahijja Raimi-Abraham October 20, 2022 Dr Bahijja Raimi-Abraham is a pharmacist, Lecturer in Pharmaceutics at King’s College London, Founder and Academic Lead of King’s College London Fight the Fakes. She leads her research group 'The Raimi-Abraham Group' which focuses on solving pharmaceutical challenges in infectious diseases with a particular interest in malaria, tuberculosis, and latent and asymptomatic infections. Dr Raimi-Abraham is the founder and…
Find out more »Danny’s Dose’s Family Education Event: Baton Rouge, LA
Danny's Dose Family Education Event: Baton Rouge, LA October 22, 2022 FOR ADULTS and FAMILIES LIVING WITH RARE DISEASE OR CHRONIC ILLNESS REQUIRING SPECIALIZED EMERGENCY CARE and/or MEDICATIONS! 10:00 – 10:15: Registration 10:15 – 12:15: Adult - Education & Bowling Children – EMS Education / Bowling / Outdoor Activities 12:15 -- 1:00: Lunch 1:00: End & Distribute Zoo Tickets*** (If funds available) Vendors will be available throughout the afternoon from 11:00 to 4:30 Click here to sign up.
Find out more »November 2022
The Center for Chronic Illness WA State Rare Chronic Illness Support Group
WA State Rare Chronic Illness Support Group A supportive group for WA state residents living with rare health challenges facilitated by Carrie Pope, MSW, LICSW 2nd Friday of each month, 1:30-2:30pm PST This program is currently meeting virtually. Visit www.thecenterforchronicillness.org/groups to sign up for free!
Find out more »Cambridge Rare Disease Network’s RAREfest22
The Cambridge Rare Disease Network presents RARE Fest 2022 Engage.Educate.Empower. November 25-26, 2022 WE’RE BACK IN PERSON FOR RAREFEST22!! For the experts and the curious of all ages. For everyone. For free! RAREfest22 is a public-facing, 2-day rare disease inspired festival with interactive exhibits, talks, film and art showcasing ground-breaking science, visionary technology and pioneering organisations, improving lives and bringing hope to those affected by rare conditions. To register, click here.
Find out more »December 2022
The Center for Chronic Illness WA State Rare Chronic Illness Support Group
WA State Rare Chronic Illness Support Group A supportive group for WA state residents living with rare health challenges facilitated by Carrie Pope, MSW, LICSW 2nd Friday of each month, 1:30-2:30pm PST This program is currently meeting virtually. Visit www.thecenterforchronicillness.org/groups to sign up for free!
Find out more »February 2023
EveryLife Foundation for Rare Diseases Rare Disease Week on Capitol Hill
Rare Disease Week on Capitol Hill February 28-March 2, 2023 NOTE: Rare Disease Week on Capitol Hill 2023 is an in-person event with some events accessible via livestream. Meetings with Members of Congress are in-person only. Now in its 12th year, Rare Disease Week on Capitol Hill empowers and inspires hundreds of advocates each year. The connections you make during the week will impact rare disease patients for generations to come. Hosted by the Rare Disease Legislative Advocates (a program…
Find out more »May 2023
National Organization for Rare Disorders’ Living Rare, Living Stronger Patient and Family Forum
NORD's Living Rare, Living Stronger Patient & Family Forum May 6, 2023 featuring the Rare Impact Awards (May 4) Hosted at the Renaissance Downtown Hotel, we will bring the rare disease community together in our nation’s capital for a day of learning, networking and fun! Hear real stories from our community and gain practical knowledge to help you live your best life while navigating your rare disease journey. To register, click here.
Find out more »Terrapinn’s World Orphan Drug Congress USA 2023
World Orphan Drug Congress USA 2023 May 23-25, 2023 The World Orphan Drug Congress brings together leading pharmaceutical and biotech companies, government and regulatory authorities, patient advocacy groups, payers, investors and solution providers. The conference is a place to meet and brainstorm ways to advance orphan drug development and improve access to life-saving therapies. Join us for three days in Washington for the most comprehensive program and inclusive gathering of rare disease stakeholders. To register, click here.
Find out more »July 2023
Uplifting Athletes’ Minnesota Twins at Seattle Mariners Game Day Uplifting Experience
Minnesota Twins at Seattle Mariners Game Day Uplifting Experience July 17, 2023 T-Mobile Park, Seattle, WA Uplifting Athletes is excited to invite rare individuals and families to join us for a game day at T-Mobile Park in Seattle, WA on Monday, July 17 at 4:40pm PDT. Register for free and cheer on the Minnesota Twins as they go head-to-head against the Seattle Mariners! This Uplifting Experience will include game tickets, t-shirts, food, beverages, and much more. This event is inclusive and…
Find out more »August 2023
Uplifting Athletes’ 10,000 Mile Challenge
Uplifting Athletes 10,000 Mile Challenge August 10-19, 2023 Are you an avid runner, swimmer, or cyclist? Do you roll on wheels of any kind or are a casual walker? Whether you're an Olympic athlete or just getting your steps in during your jog to catch the subway—you can help us put our mission into motion! We have 10 days to create a brighter future for those facing a rare diagnosis. Join us as we reach 10,000 miles of movement to…
Find out more »September 2023
Uplifting Athletes’ Oakland A’s Game Day Uplifting Experience
Oakland A's Game Day Uplifting Experience September 15, 2023 Alameda County Coliseum, Oakland, CA Uplifting Athletes is excited to invite rare individuals and families to join us for a memorable gameday with the Oakland Athletics in Oakland, CA on Friday, September 15 at 3:40pm PST. Register for free and cheer on the A’s as they go head-to-head against the San Diego Padres! This Uplifting Experience will include parking, suite access including food, beverages, t-shirts, and much more. This event is…
Find out more »October 2023
National Organization for Rare Disorders’ 2023 NORD Breakthrough Summit
2023 NORD Breakthrough Summit October 16-17, 2023 Registration is now open for NORD's Rare Diseases and Orphan Products Breakthrough Summit! On October 16-17 at the Marriott Marquis in Washington, DC, join hundreds of rare disease advocates, experts, and stakeholders from around the world to tackle the most pressing issues facing the rare disease community. This year's agenda features topics including the future of gene editing, the impact of the Inflation Reduction Act, harnessing the power of AI for diagnosis, diversity and equity in rare diseases, and so…
Find out more »January 2024
Cell & Gene Therapy Insights’ The Role of AI in Predicting Stem Cell Donor Availability Webinar
The Role of AI in Predicting Stem Cell Donor Availability Webinar January 31, 2024 The success of unrelated donor stem cell transplants depends on not only finding genetically matched donors but also donor availability. On average, 50% of potential donors in the National Marrow Donor Program database are unavailable for a variety of reasons after initially matching a patient, with significant variations in availability among subgroups (e.g., by race or age). Several studies have established univariate donor characteristics associated with…
Find out more »
