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X-WR-CALNAME:Batten Disease Support & Research Association
X-ORIGINAL-URL:https://bdsrafoundation.org
X-WR-CALDESC:Events for Batten Disease Support & Research Association
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20250330
DTEND;VALUE=DATE:20250331
DTSTAMP:20260410T191608
CREATED:20250321T203938Z
LAST-MODIFIED:20250321T204021Z
UID:20915-1743292800-1743379199@bdsrafoundation.org
SUMMARY:DEADLINE: International Batten Disease Awareness Day T-Shirt Design Contest
DESCRIPTION:T-Shirt Contest: IT’S BACK AGAIN! For the third straight year\, we are holding another T-shirt contest to determine the design of this year’s International Batten Disease Awareness Day T-shirt! Previous winners include: \n2024: Kennedy Reed\n2023: Kris Bonagofsky \nDEADLINE: Design Submissions will be accepted through 11:59 p.m. EDT on Sunday\, March 30th. Submissions are limited to one per person. \n\nBDSRA will narrow submissions down to three finalists in early April. Once there are three finalists\, the community will vote on the winner\, which will be unveiled later in April. \nPlease find the design guidelines\, instructions\, and deadline for this year’s contest by clicking here.
URL:https://bdsrafoundation.org/event/deadline-international-batten-disease-awareness-day-t-shirt-design-contest/
CATEGORIES:Advocacy Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250224
DTEND;VALUE=DATE:20250227
DTSTAMP:20260410T191608
CREATED:20250116T232917Z
LAST-MODIFIED:20250221T214158Z
UID:20670-1740355200-1740614399@bdsrafoundation.org
SUMMARY:Rare Disease Week on Capitol Hill
DESCRIPTION:UPDATE: FDA-NIH Rare Disease Day has been postponed. \nClick here for Rare Disease Week on Capitol Hill information.
URL:https://bdsrafoundation.org/event/rare-disease-week-on-capitol-hill-fda-nih-rare-disease-day/
CATEGORIES:Advocacy Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240609
DTEND;VALUE=DATE:20240610
DTSTAMP:20260410T191608
CREATED:20240506T193412Z
LAST-MODIFIED:20240506T194345Z
UID:18818-1717891200-1717977599@bdsrafoundation.org
SUMMARY:International Batten Disease Awareness Day
DESCRIPTION:  \nAbout this event: Join us as we celebrate Batten families around the world and raise awareness and funds! The BDSRA Foundation is hosting the 2024 International Batten Disease Awareness Day Virtual 5K on Sunday\, June 9th\, 2024. You don’t have to participate in the virtual 5K to advocate for Batten disease. This year\, we’re providing a variety of activities for you to raise awareness and funds for Batten disease and BDSRA\, including fundraising\, sending letters to your congressional representatives\, and more. \nClick here for more information.
URL:https://bdsrafoundation.org/event/international-batten-disease-awareness-day/
CATEGORIES:Advocacy Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240301T090000
DTEND;TZID=America/New_York:20240301T163000
DTSTAMP:20260410T191608
CREATED:20240118T151308Z
LAST-MODIFIED:20240118T152255Z
UID:18348-1709283600-1709310600@bdsrafoundation.org
SUMMARY:Rare Disease Day at FDA
DESCRIPTION:For complete information on this event\, including registration\, click here. \n“FDA will host Rare Disease Day\, a virtual public meeting\, on March 1\, 2024 in global observance of Rare Disease Week. This year’s Rare Disease Day is dedicated to patients and health care professionals. Panels will discuss: \n\nThe legal framework for approving studies and medical products at FDA\nWhat FDA does during review processes to approve medical products\nDecentralized clinical trials and digital health technologies\nWhere to find important information and documents related to clinical trials\nInformation that can be obtained from medical product labels\nLegal and ethical requirements for consent forms in clinical trials\nFDA initiatives to advance medical product development for rare diseases\nWays for patients to engage with FDA.”
URL:https://bdsrafoundation.org/event/rare-disease-day-at-fda/
CATEGORIES:Advocacy Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240229T090000
DTEND;TZID=America/New_York:20240229T170000
DTSTAMP:20260410T191608
CREATED:20240118T145747Z
LAST-MODIFIED:20240118T152045Z
UID:18346-1709197200-1709226000@bdsrafoundation.org
SUMMARY:Rare Disease Day at NIH
DESCRIPTION:For complete information on this event\, including registration\, click here. \n“Rare Disease Day at NIH will be held at NIH Main Campus (Natcher Conference Center) on Thursday\, Feb. 29\, 2024\, from 9 a.m. to 5 p.m. EST. There also will be a virtual livestream via NIH VideoCast with the event archived for replay afterward. The event agenda will feature panel discussions\, rare diseases stories\, in-person exhibitors and scientific posters\, and an art exhibition. The event is free and open to the public.”
URL:https://bdsrafoundation.org/event/rare-disease-day-at-nih/
CATEGORIES:Advocacy Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240225
DTEND;VALUE=DATE:20240229
DTSTAMP:20260410T191608
CREATED:20240113T010456Z
LAST-MODIFIED:20240118T152132Z
UID:18340-1708819200-1709164799@bdsrafoundation.org
SUMMARY:Rare Disease Week on Capitol Hill
DESCRIPTION:For complete information on this event\, including registration\, please visit the EveryLife Foundation for Rare Diseases website. \n“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. \nHosted by the Rare Disease Legislative Advocates (a program of the EveryLife Foundation for Rare Diseases)\, this multi-day event brings together rare disease advocates from across the country to make their voices heard by their Members of Congress. Participants are educated on policy proposals impacting the rare disease community and provided opportunities to advocate for policy changes directly to their Members of Congress. No matter one’s connection to rare disease or their advocacy experience level\, all are welcome.”
URL:https://bdsrafoundation.org/event/rare-disease-week-on-capitol-hill/
CATEGORIES:Advocacy Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230609
DTEND;VALUE=DATE:20230612
DTSTAMP:20260410T191608
CREATED:20230420T155133Z
LAST-MODIFIED:20230610T183018Z
UID:16227-1686268800-1686527999@bdsrafoundation.org
SUMMARY:International Batten Disease Awareness Day/Virtual 5K
DESCRIPTION:Our goal is to honor and support those affected by Batten disease and to raise awareness and funds so BDSRA can continue to advocate for all CLN types. \nUPDATE: Donations will be accepted through Sunday\, June 11th. \nAbout this event: Join us as we celebrate families around the world and raise awareness and funds! BDSRA is hosting the 2023 International Batten Disease Awareness Day Virtual 5K on Friday\, June 9th\, 2023. \nSIGN UP ON THE OFFICIAL REGISTRATION PAGE HERE \nWhat exactly IS a Virtual 5K?: It is just like any other 5K\, except there is no official race location. The virtual part of this means no traveling and no early start times! It also means you get to choose where\, with whom\, and even how you want to complete the 5K. This 5K can be done at any time leading up to June 9th. It can even be done in increments\, keep track of your distance until you hit the 5K. \nHow to participate to raise funds and awareness: This event is open to individuals of all ages and abilities. Once you register\, either as an individual or as part of a team\, the focus then shifts to raising funds. Set a personal/team fundraising goal and encourage your family\, friends\, community\, etc. to donate to your fundraisers. BDSRA set a $10\,000 goal this year. The proceeds you raise towards that goal help BDSRA build and maintain staff who’ll provide compassionate support and advocacy for all types of Batten disease. \n \nDuring International Batten Disease Awareness Day we ask participants to post pictures of themselves on their 5K route. Tag BDSRA in your posts and use the hashtag #BattenDay2023. By using #BattenDay2023 and tagging BDSRA on your social media posts\, we will be able to keep up with the fun. \nOrdering T-Shirts: Pictured below are this year’s T-shirts. \n                            Front                                                 Back \n   \nUPDATE: The T-shirt order deadline has passed. \nRacing Bibs: Who are you running for in this virtual 5K? Click the button below to download this year’s racing bib and write who you’re dedicating your virtual walk/run for. Share on social media\, use the hashtag #BattenDay2023\, and tag BDSRA to have your post shared! \nClick here to download your racing bib!
URL:https://bdsrafoundation.org/event/international-batten-disease-awareness-day-virtual-5k-2023/
CATEGORIES:Advocacy Event,Seasonal Events
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220918T190000
DTEND;TZID=UTC:20220918T200000
DTSTAMP:20260410T191608
CREATED:20220909T185318Z
LAST-MODIFIED:20220912T154101Z
UID:15545-1663527600-1663531200@bdsrafoundation.org
SUMMARY:Advocacy Committee Meeting
DESCRIPTION:Our Advocacy Committee invites you to discuss local and federal advocacy efforts\, Newborn Screening\, Rare Disease Week\, how to share your story\, and more! \nVirtual meetings will be held on the third Sunday of each odd month at 7 p.m. ET. The first meeting will be held on Sunday\, September 18th! \nPlease email info@bdsrafoundation.org to get started!
URL:https://bdsrafoundation.org/event/advocacy-committee-meeting/
CATEGORIES:Advocacy Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220609T080000
DTEND;TZID=America/New_York:20220609T200000
DTSTAMP:20260410T191608
CREATED:20220330T155631Z
LAST-MODIFIED:20220330T155652Z
UID:13789-1654761600-1654804800@bdsrafoundation.org
SUMMARY:International Batten Awareness Day 2022
DESCRIPTION:Click Here to Register! \n  \nJune 9th is International Batten Disease Awareness Day!   \nOur goal is to honor and support those affected by Batten disease and to raise awareness. \n  \nAbout this event \nJoin us as we celebrate families around the world and raise awareness!  BDSRA is hosting the 2022 International Batten Disease Awareness Day Virtual 5K on June 9th\, 2022. \n  \nWhat exactly IS a Virtual 5K? \nIt is just like any other 5K\, except there is no official race location. The virtual part of this means no traveling and no early start times! It also means you get to choose where\, with whom\, and even how you want to complete the 5K.  This 5K can be done at any time leading up to June 9th. It can even be done in increments\, keep track of your distance until you hit the 5K. \n  \nHow to participate to raise funds and awareness \nThis event is open to individuals of all ages and abilities. Once you register\, either as an individual or as part of a team\, you are set. \n  \nSince this is not a sanctioned event\, there is no penalty if you are unable to complete any or all of the 5K. However\, during International Batten Disease Awareness Day we  will be asking participants to post pictures of themselves on their 5K route. \n  \nThis is completely optional – but since our goal is to bring awareness to Batten disease\, we want to do just that. And by using #battenday2022  and tagging @BDSRA on your social media posts\, we will be able to keep up with the fun. We will highlight posts tagged with @BDSRA in our June Illuminator which will be published June 30\, 2022. \n  \n  \n  \n  \n  \nInternational Batten Awareness Day 2022 – Batten Disease Support & Research Association (bdsra.org)
URL:https://bdsrafoundation.org/event/international-batten-awareness-day-2022/
CATEGORIES:Advocacy Event
ORGANIZER;CN="BDSRA":MAILTO:info@bdsra.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220222
DTEND;VALUE=DATE:20220303
DTSTAMP:20260410T191608
CREATED:20220118T203732Z
LAST-MODIFIED:20220118T203732Z
UID:13654-1645488000-1646265599@bdsrafoundation.org
SUMMARY:Rare Disease Week on Capitol Hill
DESCRIPTION:Rare Disease Week on Capitol Hill brings together rare disease community members from across the country to be educated on federal legislative issues\, meet other advocates\, and share their unique stories with legislators. \n\nRare Disease Week
URL:https://bdsrafoundation.org/event/bdsra-rare-disease-week-on-capitol-hill/
CATEGORIES:Advocacy Event
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