@swanusa

Inspiring Hope for the #Undiagnosed

 National
undiagnosed-usa.org
Joined September 2009
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Today is #undiagnosedchildrensday Plz join voices & efforts to raise #awareness, knowledge, data & science. We’ve been on an undiagnosed odessey 15+yrs #hopeforJack Our mission:Find a dx & an individual treatment plan for all #PrecisionMedicine @UDNconnect @swanusa @mattmight
Julie Comperchio@JulesC202229 Feb 2020
#RareDiseaseDay He’s my WHY♥️Why I fiercely #Advocate,Pursue #researchers,Persistently engage #clinicians & Actively track down #Pioneers in #precisionmedicine All for my 17 yo son, Jack.Who has a #muscledisease of “unknown etiology.” 14+yrs on the Undiagnosed Odyssey #forhim🦓💪🏼
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Today is Undiagnosed Rare Disease Day! Learn more about what it means to be #undiagnosed, the #resources available to our undiagnosed #raredisease #community. A special thank you to everyone that shares this info to raise #awareness #UndiagnosedDay RUN tinyurl.com/2ts6unwt
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We’re on the red carpet! #Oscars
Crip Camp directors and producers on the red carpet. Andraea, a Black disabled woman wearing a sequined dress, holds the leash of a labrador dog. Next to her is Judy Heumann, wearing a white dress suit. To her right is Nicole Newnham, a white woman wearing a white Grecian style dress. Jim LeBrecht is wearing a blue tuxedo sitting in a motorized wheelchair. Sara Bolder is standing behind him wearing a tuxedo. Howard Gertler is wearing a tuxedo to the right.

ALT Crip Camp directors and producers on the red carpet. Andraea, a Black disabled woman wearing a sequined dress, holds the leash of a labrador dog. Next to her is Judy Heumann, wearing a white dress suit. To her right is Nicole Newnham, a white woman wearing a white Grecian style dress. Jim LeBrecht is wearing a blue tuxedo sitting in a motorized wheelchair. Sara Bolder is standing behind him wearing a tuxedo. Howard Gertler is wearing a tuxedo to the right.

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30th April: Undiagnosed Children's Day Let's join efforts 4 the benefit of #undiagnosed #children in the #world @SWAN_UK @swanusa @swanaus @WilhelmFound @HeleneCederroth @MikkCederroth @UDNIss @UDNconnect @RareDiseaseGh udninternational.org #equity #health #udnicommunity
SWAN UK (syndromes without a name)@SWAN_UK23 Apr 2021
🥳 We're so excited to be throwing a virtual disco to celebrate Undiagnosed Children's Day on 30 April, 16:30-17:15! If you're a SWAN UK member come along and help us celebrate all of our fabulous families. Email [email protected] to register. #UCD2021 #BigBirthday
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Do you want to find out more about SWAN UK and the work we do? Come along to our information event and hear from families who are affected by #undiagnosed and #genetic conditions: ow.ly/KWx050EhMNH. @MedGenWales @GenomicsWales @tyhafan
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This documentary aims to take viewers through the lived experiences of persons living with rare and undiagnosed diseases, their caregivers and family members, and a story about how a diagnostic nightmare of a journey became one of hope.
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It’s Critical for continuity of care that Patients & Parents of pediatric patients, are recognized as trusted & valued members of the health care team #patientsaspartners #bridging thegap
SWAN Australia@swanaus17 Mar 2021
"Patients should be recognised as part of the health care team". A good care partnership has the "capacity to engage patients and their families at all levels at the same time" - Great key note address from @DumezVincent at the #ShifitingGearsSummit @CHFofAustralia
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Illuminating buildings has become part of #RareDiseaseDay This year we have more than 1⃣5⃣0⃣ buildings changing their colours to raise awareness for people living with a rare disease! 📣Tell us which building you would like illuminated for Rare Disease Day 👇👇👇
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Applications for this year's #RARECompassionProgram close this week! Help foster an environment of understanding and connection between medical professionals and #raredisease patients through this one-of-a-kind program and apply by 2/28. globalgenes.org/compassion/
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Have you registered for the first RARE on the Road event of the year? Join us March 23 for this Rare Disease Leadership Interactive Webinar for info on the latest rare disease policy and advocacy tips. #CareAboutRare globalgenes.org/rare-on-the-…
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You want to advocate for people living with a rare disease but you don’t know how? 🤔 📣 Learn how to advocate using the #RareDiseaseDay equity toolkit! 👉download2.rarediseaseday.org…
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In honor of #WorldRareDiseaseDay, Behind the Mystery has produced a special that will air on @lifetimetv on 2/24. In the episode, the team spoke with WEGO Health Patient Leaders William Yank, @travisflores @kelbarendt. Don't miss this special! @BalancingActTV @RareDiseases
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THE EQUITY ⚖️TOOLKIT FOR PATIENT ADVOCATES IS OUT NOW! Use the #RareDiseaseDay toolkit to advocate for people living with a rare disease and let’s make sure that we leave no one behind! 💪 Download the toolkit here! 👉download2.rarediseaseday.org…
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The doctors, nurses and carers strongly support a better daily life of the people living with a rare disease and their families Tag here this special person who supports you! #RareDiseaseDay
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For #RareDiseaseDay we need everyone to join the movement to redefine rare! More than 300 million people living with a rare disease, families & carers form the rare disease community 🌎 Rare is many. Rare is strong. Rare is proud. How will you redefine rare❓
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What an incredible way to honor Bertrand’s legacy 💙 so important to help shorten the diagnostic odyssey for rare disease patients everywhere. – at Laguna Niguel, CA
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Starting my day with a reminder why we have to work so hard with a wonderful and poignant talk from @mattmight on his son Bertrand being an accidental pioneer in precision medicine ted.com/talks/matt_might_bei… via @TEDTalks
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For some, the day we learned of our diagnosis is a happy day. Imagine having your friends and family thinking that you are overreacting or searching for some attention 🤔 👉 Read the testimonies of people who were feeling this way: rarediseaseday.org/page/news… #RareDiseaseDay
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