EP27: Empower and Impact Through July Awareness Months, Days, and More in Your Rare and Relevant TL:DR for mid-July 2023

Welcome to Signalise: a Dazzle4Rare podcast guest-hosted by Sam Fillingham, CEO of PIP-UK the Poland Syndrome Charity and Torie Robinson of the Epilepsy Sparks podcast. 

In this episode, we Sam and Torie share events and news relevant to July 2023. We start with Fragile X Syndrome Awareness Month, Sarcoma Awareness Month, Glioblastoma Awareness Day, World Castleman Disease Day, World Sjogren's Day, CTNNB1 Awareness, Legg-Calve-Perthes Awareness Day, and Jansen's Disease Awareness Day.

 

This month also marks Acute Necrotizing Encephalopathy (A.N.E) Awareness Day, a condition affecting young children, and the efforts of ANE International to support affected families.

 

On the non-rare front, we discuss Chronic Disease Day, advocating for better healthcare and healthier communities worldwide. In conferences, we remind listeners about the Health Union Annual Social Health Connexion Conference, a virtual event connecting global healthcare advocates on July 25-26, 2023.

 

We also share news about the Rare Youth Revolution's project "My Life, My Genetics," making genetic information accessible for young people. This project is driven by individuals living with various rare conditions, aiming to educate others about genetics and relationships.

Stay informed and engaged with these crucial events, conferences, and more in our global rare and associated communities. Many thanks to both Sam and Torie for helping with this week's episode. 

Kimberly will be back for episode 28 as we get closer to Dazzle4Rare 2023!

 

What About Poland Syndrome? 

Epilepsy Sparks

 

---- Don't miss an episode of Signalise! Be sure to ✔️FOLLOW or ✔️SUBSCRIBE via your podcast app of choice. You can also follow #Signalise news on @Dazzle4Rare on Facebook , Instagram , and Twitter. You can find host Kimberly on LinkedIn at @kattague.

Episode Transcript

(00:00):
Hi I'm your host, Kimberly Thomas tag and you're listening to Signalise Dazzle Fire podcast. Whether you're a patient advocate, caregiver, or clinician, Signalise is yoursource for good news, personal stories, events, and the things that rare and associated communities care about. Follow Signalise and Dazzle4Rare at D A Z Z L E, the number four,

(00:20):
R A R E on Facebook, Instagram and Twitter,where we'll post episode links, updates and
Welcome to Signalise, a dazzle for rare podcast I am SamFillingham, CEO of Pipe UK, the Poland syndrome charity,
A member of the Rare disease community here to help our friend Kimberlyat Dazzle for rare, let's get going with the mid-july edition of Rare.

(00:46):
And relevant.
Kimberly touched on these dates in more depth than a previous episode, so I'll run through the remaining dates. Firstup, it's fragile X Syndrome Awareness month. This month, a rare genetic disorder that affects intellectual development.
July is also sarcoma awareness, educating people around the world about these insidious and rare cancers that develop in the muscle,bone, nerves, cartilage and other soft tissues of the body. Also, this month, Glioblastoma Awareness Day or PBM day is observed.

(01:23):
On the 19th.
World Cattlemen's Disease Day and World Shogren's Day on the 23rd CTM, NB One awareness on the 25th andLegg-Calve-Perthes Awareness Day on the 29th and Johnson's Disease Awareness Day on the 30th of July.
The 31st of July we honour acute Necrotising EncephalopathyAwareness Day, also known as ♪♪♪ Awareness Day.

(01:49):
This condition typically affects young children and is associated with viral infections,which leads to a rare inflammation of the brain. The good people of A&E International.
Kim and Rachel have worked hard to establish this day around the world, giving hope and a spiritual home on the Internetto families forever changed by this rare neurological condition. We hope you have an amazing awareness day this year.

(02:15):
Finally, we have a non-rare awareness day that aptlyties into many of our lives which is chronic disease day.
This awareness day happens annually on the 10th of July, advocating for lower, preventableillnesses, improving access to care and building healthier communities around the world.

(02:38):
Moving on to conferences, wherever last minute conference reminder for the Health Union annual social Health Connections Conference takes place on the 25th and26th of July, virtually during global healthcare advocates and influencers for two days of connection and learning the conference speech with sessions on health.
Leadership refining your advocacy goals and levelling up your health leadership skills.Don't miss out on the Social Health Awards ceremony, where nominees will be celebrated.

(03:07):
For their public.
Engagement and education throughimpactful work as health leaders.
Mark your calendars and phenomena Nees look out for your official invitation coming soon. Friends of the podcast Tori Robinson of Epilepsy SportsPodcast and Carrie Wong are float like a butterfly and kaleidoscope are both nominated in the social Media Master category. Best of luck to you both.

(03:32):
Moving on to non-rare awareness events, we recognised national minority Health AwarenessMonth, focusing on the mental health challenges faced by racial and ethnic minority groups.
And each July in the UK we have the big listen a day tolisten, to, speak and reflect on mental health in the UK.
On this day, Samaritan branches across the UK and Ireland hold local events are part of the BigClifton campaign, aiming to raise awareness about the services they provide in their communities.

(04:02):
It's an opportunity to come together and discuss the invaluable supports andMaritimes offered for those in need of someone to listen and provide perspective.
Remember the Samaritans are available 24/7and can be reached at 116123. That's 1.
16123 Remember, if you or someone you know needs emotional support, there are help linesavailable in various countries in the UK. As we said, you can reach out to Samaritans.

(04:31):
And 116123, while in Canada the toll-freenumber is 18334564566, that's 18334564566.
In the US, the 988 Life Line provides a freeand confidential support 24 hours a day.

(04:54):
That's 988 in the US and for those in India, the mental healthrehabilitation helpline Cairo, can be reached on 1/8 hundred 5990019.
That's one 805 nine 90019. Stay informed and engaged with theseimportant awareness events and conferences happening this July.

(05:22):
Thank you to Sam Fillingham of PIP UK. Hi everybody. My name is ToryRobinson and I'm here covering for the fabulous Kimberly Thomas Tate.
I'm also the podcast host for epilepsy Sparks Insights, where I talkwith inspirational clinicians, researchers, and scientists who work in
the spirit of the epilepsies.
There are actually heaps of rare genetic epilepsies, so it'swonderful to have Kimberly increasing awareness of them through

(05:45):
the #Dazzle4Rare podcast.
Rare revolution and rare youth revolution news rare youth Revolutionhas recently launched their new project called My Life, My Genetics.
This project aims to make genetic information more accessiblefor young people, focusing on genetics and relationships.
The team behind the project consists of young individuals who are living with various rare conditions, including Ellis Thermos syndrome, chronic intestinalpseudo-obstruction, lupus scoliosis, Fredrick ‘s ataxia and a PS1 syndrome. My life, my genetics is an informative series on genetics and relationships.

(06:22):
Created by youngpeople, four young people.
To learn more about this project, visit their website at rareyouthrevolution.com/mylife my Genetics Lord Breakthrough Summit 2023 and Rare Revolution MediaPartnership, The Lord Rare Disease is an orphan products breakthrough Summit is set to take place from October the 15th through to October the 17th, 2023.

(06:47):
Hosted by the national organisations for rare disorders, or Nord, this event brings together over900 key stakeholders, including FDA representatives, patient organisations and industry experts.
The summit focus will be on topics like accelerated drug approval, newborn screening and equitable access to care. The summit aims to address the issues faced by the globalrare disease community. Attendees can look forward to multi stakeholder discussions, collaborative problem solving and exhibitors such as GSK, Neurocrine Biosciences.

(07:21):
Foundation medicine and world orphan drug the media partners for the summit alsoinclude Rare Revolution magazine check, rare patient empowerment, network and star.
Registration and key dates are availableon the Nord website, whichisnordsonmit.org.

(07:43):
Other news, the power pressure ovarian Cancer Research Foundation, is offering an exciting opportunity for advocates in the field. They are providing a chanceto attend the Department of Defence Ovarian Cancer Academy annual retreat and the American Association for Cancer Research Special Conference ovarian cancer.
One research advocate will be selected through the application process to attend theseconsecutive events, taking place in Boston from October the 3rd to the 7th, 2023.

(08:11):
To learn more about this opportunity and apply, visit jkontherun.comSlash 2008 Slash 01/01 slash coffee, hyphen break hyphen G-2.
Hi, this is Kimberly. And I just wanted to jump on here at the end of the podcast to thank Sam Fillingham of PolandSyndrome Support UK, otherwise known as Pipe UK and Tori Robinson of the Epilepsy Sparks Podcast. Thank you to both for

(08:44):
helping out with this week's episode, I really appreciate it. Thank you alsoto the lovely folks in our global community for your support and understanding.
While I have been on the mend, which continues to improve each day, I look forwardto raising loads of awareness with all of you on the second week of August the 7th.

(09:05):
Through the 13th forthe 7th annual Dazzle.
We're there if you haven't yet, please go ahead over to the website dazzleforour.net and add yourorganisation or your advocacy work to the website so that we can help increase your social reach.
Also, if you have news events or any audio clips that you'd like toshare here in the podcast, we'd love to share them and help Signalise.

(09:29):
Your message for more people to hear? Thanks so much to everyone for your help with this episode. Thanks againto Sam and Tori and I will drop links to their podcasts in the show notes. Have a great day and I'll see you.

Thanks for listening to this week's episode of Signalise (09:44):
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