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Episodes
Wednesday Aug 23, 2023
Wednesday Aug 23, 2023
In this episode, Kimberly takes a closer look at the journey we’ve taken together over the last seven years with #Dazzle4Rare. From grassroots, this annual event has been a spark of hope uniting us across multiple continents over the years.
It sure has been a journey in all senses of the word. From hearing people greet each other in various languages in the past to seeing people participate from various countries around the world. It’s been really enlightening.
So let’s chat about some insights I’ve collected, scattered as they may be, over the last seven years.
Event Summary from 2016 to 2023 with insights and data from events
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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.
Wednesday Aug 02, 2023
Wednesday Aug 02, 2023
Join us in this special and reflective episode of Dazzle4Rare, where we take a journey through time with some remarkable individuals who have been at the heart of our mission. In anticipation of Dazzle4Rare 2023 this August, we've gathered past and present co-hosts who have been instrumental in making a difference: Sam Fillingham from PIP UK, Lee Reavey from NCBRS, David Ross from the Men's Mental Health Group, and Sean Gordon from Rare Funding Team and RAREVerse.
In this episode, we delve into the archives and bring you insightful snippets from Kimberly's conversations with each of these incredible co-hosts. Through laughter, poignant moments, and thought-provoking discussions, we highlight the invaluable perspectives they've shared on the podcast. Join us as we revisit the milestones, challenges, and triumphs that have shaped Dazzle4Rare and those who participate in the annual event.
Get ready to be inspired, moved, and motivated by the collective wisdom and experiences of our esteemed guests. As we pave the way for Dazzle4Rare 2023, we invite you to relive these meaningful exchanges and anticipate the exciting future we're building together in the rare community. Tune in and celebrate the power of unity, resilience, and advocacy in the world of rare conditions.
Wednesday Jul 19, 2023
Wednesday Jul 19, 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.
Wednesday Jul 05, 2023
Wednesday Jul 05, 2023
In this episode, we dive into a range of events, discussing various awareness days taking place in July, and highlighting opportunities that focus on patient-centered initiatives for rare diseases.
We also discuss various awareness days in July, including Chronic Disease Day, Glioblastoma Awareness Day, World Castleman Disease Day, World Sjögren's Day, #CTNNB1 Awareness, Legg-Calve-Perthes Awareness Day, Jansen’s Disease Awareness Day, and Acute Necrotizing Encephalopathy (ANE) Awareness Day. We highlight the finalists for the Social Health Awards and provide updates on the Xcelerate RARE challenge, Well-CAST Caregiver Support program, and Patient Office Hours.
Source links:
Fragile X Syndrome: fragilex.org
CDC Mental Health Awareness: cdc.gov
Sarcoma Awareness: surgicaloncology.co.uk
Chronic Disease Day: aha.org, ec.europa.eu
Glioblastoma Awareness: glioblastomafoundation.org
World Castleman Disease Day: castleman.org
Jansen’s Disease Awareness Day: thejansensfoundation.org
Rare Disease Clinical Trial Network: https://twitter.com/rare_trial
Social Health Awards Finalists: wegohealth.com
Well-CAST Caregiver Support: kelleherlab.weebly.com
Patient Office Hours: rarecommunity.org
Patient-Centricity in Clinical Trials: PMLive website, Nature journal website
Conferences: Social Health Network/Health Union Conexxion Conference, health-union.com
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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.
Wednesday Jun 21, 2023
Wednesday Jun 21, 2023
Welcome to this week’s episode of Signalise: a Dazzle4Rare podcast. Bringing you the TL;DR on the the latest in the world of rare and associated conditions. This week, we'll be discussing what's happening in the realm of awareness, highlighting both rare and non-rare awareness events, spotlighting upcoming conferences in July, and a quick-fire roundup of global news in the rare and associated communities around the world. Let’s not forget your Dazzle4Rare 2023 info!
Strap in with your favourite beverage or snack and let’s do the darn thing!
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Links
https://www.dazzle4rare.net/awareness_days/
https://sjogrens.org/
https://aneinternational.org/acute-necrotizing-encephalopathy/
http://www.samaritans.org/about-samaritans/our-organisation/what-we-do/
http:// camraredisease.org
https:// socialhealthconnexion.com
https://www.fightingtherare.com/
resourceshub.rarebeacon.org
https://signalise.podbean.com/e/ep17-edira/
https://cypmedtech.nihr.ac.uk/2023/02/28/smart-suit-featured-on-bbc-news/
https://timesofindia.indiatimes.com/city/hyderabad/rare-disease-patients-in-hyd-trapped-in-funding-quagmire/articleshow/101093534.cms?from=mdr
https://www.nottinghampost.com/news/celebs-tv/mrs-hinch-reveals-three-year-8534938
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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.
Wednesday Jun 07, 2023
Wednesday Jun 07, 2023
Happy Pride Month!
Hey, welcome to another episode of Signalise and happy Pride Month 2023! In today's episode, we'll be giving you the rare and relevant TL;DR and LGBTQ+ Price as it intersects with the URCIID or undiagnosed, rare, chronically and invisibly ill, and Disability communities. We acknowledge that people hold a range of beliefs and ideologies, including those shaped by religion or political affiliations. Our intention is to create a safe and inclusive space for open dialogue and understanding, regardless of these affiliations, understanding everyone has unique and diverse beliefs. We invite everyone to join us on this journey of learning, empathy, and celebration of the rich diversity that makes our space so special.
Pride Month is celebrated globally in June, honoring the LGBTQ+ community's history, milestones, and ongoing quest for equality in our global society. Later in the podcdast, we'll talk about how individuals with rare diseases navigate their diverse identities, find support within the LGBTQ+ community, and overcome unique challenges.
Join the celebration of experiences, resilience, and history but first, grab your beverage of choice and check out this episodes Rare and Relevant, your TL;DR for our global space!
Links Mentioned:
Dr. Nicholas Garnier https://www.podbean.com/eas/pb-wyvsv-1414f86
https://www.dazzle4rare.net/add-calendar/
Intrahepatic Cholestasis of Pregnancy (ICP) Awareness Month - https://icpcare.org/
neonatalscreeningday.org
https://www.worldwithoutdisease.com/
https://globalmeet.webcasts.com/starthere.jsp?ei%3D1619066%26tp_key%3D3051ea4f62%26sti%3Dmjhemail&sa=D&source=calendar&usd=2&usg=AOvVaw28fJ5K5yn6puTyjRGp7fVh
https://mcri.zoom.us/webinar/register/7616855842897/WN_Fwaw6T_sTOCknWCfgT89VQ
www.gov.uk/government/news
https://www.swissinfo.ch/eng/multimedia/swiss-research-helps-paralysed-man-walk-again-using-implants-that-read-brainwaves/48561514#:~:text=A Dutch man who was,spinal cord to activate muscles
https://rightasrain.uwmedicine.org/well/health/early-MS-symptoms
https://globalgenes.org/event/rare-health-equity-forum/
https://globalgenes.org/event/rare-advocacy-summit/
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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.
Wednesday May 24, 2023
Wednesday May 24, 2023
Welcome to this bonus episode of Rare and Relevant TL;DR!
Our regular episode this week, the week of the 24th of May 2023 features a chat with Dr. Nicola Garnier of Screen4Care. Go check that episode out to hear our discussion about new-born screening.
Now, whether this is your first or fifth episode, thanks for being here! It means a lot to me and the folks whose news, events, and guest appearances are featured in this podcast. If you’d like to share something with us or share a voice message, check the show notes for details on how to make contact.Below are links to the information mentioned in this episode.
For folks who would like to check out Kimberly's Social Health Awards profile page, you can do so here: https://www.wegohealth.com/KimberlyT11.
PKU Info
2022 Canadian ALS Awareness
Beacon for Rare Events
Lee Reavey & Taylor Kane interview with Pam Cusick of RPV
CamRare Fun Run
Social Health Award Nominees
Rare Disease in America Survey
Hanson-Wade Conferences in June
Duchenne Care Conference (Online)
World without Disease tickets
4 Year-Old Paxton Participates in Dravet Drug Trial
FNIH Accelerates Medicines Partnership
The Death of a Metaverse
There are now 10k rare diseases
Biomarkers, Wearables, and Decentralised Trials
US Care Providers Increasingly Comfortable with D2C Genetic Tests
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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.
Wednesday May 24, 2023
Wednesday May 24, 2023
Welcome to this episode of Signalise: a Dazzle4Rare podcast. In this episode, we’re joined by Dr. Nicolas Garnier (French pronunciation: [ni.ko.la]) who’ll tell us a bit about himself and his work.
We’d planned to discuss Dr. Garnier’s work in new-born screening and the topic broadly but I couldn’t help myself; I wanted to get a more full understanding on his current project, Screen4Care where he is the consortium lead.
I think of Dazzle4Rare as a community service to our rare and associated communities so I’m glad that I dug in a little bit deeper during this chat and I hope you’ll enjoy our conversation. In fact, I’d like to have him back for a future follow-up episode so if you have questions you’d like Dr. Garnier to answer, email them over!
For those hoping to hear our TL;DR segment, Rare and Relevant, there will be a bonus episode today covering those news items. I hope you’ll listen to both but if you’re looking for some R and R, head over to that episode for what’s happening in our global community.
Links from Dr. Garnier
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5893317/
A few additional good resources:
https://www.eurordis.org/our-priorities/diagnosis/newborn-screening/ https://download2.eurordis.org/documents/pdf/eurordis_nbs_position_paper.pdf
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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.
Wednesday May 10, 2023
Wednesday May 10, 2023
We're kicking off with a bang! May is jam-packed with event, awareness days, and news! Without further ado, let’s do the darn thing and get to Rare and Relevant, Your TL;DR!
First up, it's Huntington's Disease Awareness Month, Acute Disseminated Encephalomyelitis (ADEM) Awareness Month, ALS Awareness Month, Cystic Fibrosis Awareness Month, Ehlers-Danlos Syndrome and Hypermobility Syndrome Awareness Month, Ichthyosis Awareness Month, Myositis Awareness Month, Prader-Willi Syndrome Awareness Month, Progressive Supranuclear Palsy (PSP) Awareness Month, and PTEN Hamartoma Tumor Syndrome Awareness Month, all happening from May 1st to 30th.
Speaking of PTEN awareness month, back in November of 2022 I spoke with Cowden Syndrome / PTEN syndrome patient advocate and men’s mental health advocate, David Ross where he shared a little about the association between these conditions.
If you’d like to hear the rest of the episode after this one, the link will be in the show notes.
[https://signalise.podbean.com/e/ep8-david-ross/]
Stil in May, the 15th marks International Mucopolysaccharidosis Awareness Day and Tuberous Sclerosis Complex (TSC) Global Awareness Day. And don't forget CDG Awareness Day on May 16th, dedicated to raising awareness for a family of rare metabolic diseases that are often overlooked by the medical and scientific communities.
If that’s not enough awareness for you in May, we also have World Neurofibromatosis Awareness Day on May 17th, dedicated to raising awareness for this condition, causing tumors to grow on nerves throughout the body.
On May 19th, we have #Red4Veds, a social media campaign where people are encouraged to wear red and share photos on social media to raise awareness for Vascular Ehlers-Danlos Syndrome, a rare genetic disorder that affects the connective tissues in the body. vEDS carries with it a shortened life-span with most folks rarely surpassing their 40th birthday. If you have a family history of aortic dissection, tears or eruptions of other organs, please see your GP.
And for those in Wisconsin, USA mark your calendars for Rare Disease State Advocacy Day on May 17th from 3:30pm to midnight, organized by the Every Day Life Foundation. This is a day for Wisconsin residents impacted by rare diseases to come together, meet with state legislators, and share their stories to help advance the policy priorities of the rare disease community.
What about PS? Podcast
Did you know that friend of the podcast and first guest, Sam Fillingham, has started a Poland Syndrome podcast alongside host Giselle Barbosa?
The podcast is called “What about PS?” and will be hosted primarily by Giselle. She is a PIP-UK ambassador, an entrepreneur, and an athlete!
According to the press release, “ (The) podcast aims to shine a light on Poland Syndrome, a rare disease, and the lived experience of the Poland Syndrome community. Each episode, Giselle will explore inclusive and varied experiences of people living with Poland Syndrome with a variety of guests, from Paralympian Kim Daybell, Former Cricketer Lewis Hatchett, Australian Gymnast Clay Mason Stephens to medical professionals, bra companies and the most amazing members of our community. With engaging interviews, thought-provoking discussions, and the inclusive experience of the Poland Syndrome Community. The What about PS? podcast promises to be a must-listen for anyone curious about Poland Syndrome. Including the Poland Syndrome community, their friends and families, medical professionals and the rare disease community.”
[Insert Whatsapp clip from Sam if she sends one]
Whether you are affected personally by Poland Syndrome or not, I have no doubt the podcast will be interesting and engaging! You can find them wherever you get your podcasts, just search “What about PS?”
Very quickly, also in Poland Syndrome news, a little boy here in the UK named Charlie hosted a fun-run for Poland Syndrome. He’s a big fan of PIP-UK and the amazing things they do for kids like him. He raised over £844, roughly 1,560 US Dollars or 87392 Indian Rupies, for PIP UK. He reached 168% percent of his goal! Well done, Charlie and to the 32 folks who donated to his fun run for Poland Syndrome Support UK. A link will be in the show notes.
[https://www.justgiving.com/page/pip-uk-poland-syndrome-charity-charliesrun]
News Segment
All links will be in the show notes so make sure to subscribe on your podcasting app of choice or subscribe to our YouTube Podcast. You can find us by searching Dazzle4Rare on any of these platforms.
Sanford Research hosts the 13th Annual CoRDS Great Plains Rare Disease Summit
From the 24th April press release, “Sanford Research will host the Sanford CoRDS 13th Annual Great Plains Rare Disease Summit May 11-12 in Sioux Falls. This year’s event theme is, ‘Rare Neurodevelopmental Disorders.’”
The annual summit on rare diseases aims to bring together researchers and those affected by rare diseases to collaborate and educate people on advancements in the field of pediatric neurodevelopmental disorders. The event kicks off with opening remarks from Ashish Gupta, followed by presentations from rare disease advocates Amber Freed and Allison Bones. Thursday's sessions are open to patients, families, and those in the community impacted by rare diseases.
[source: https://news.sanfordhealth.org/news-release/sanford-research-to-host-great-plains-rare-disease-summit/]
Shout-out to Allison if you’re listening!
On to topic of CoRDS and Sanford Research
Sanford Health is a non-profit health care provider in the US. They’ve created a Rare Disease Registry to gather data on rare conditions. The registry aims to improve the understanding of rare diseases and accelerate research and treatment development. The registry is open to anyone in the US with a rare condition and is free to participate in. Participants can opt to share their medical history, symptoms, and genetic information to help researchers get a better understanding of their condition. The registry also includes a biobank where participants can donate samples for further research. So far, the registry has enrolled over 2,000 participants and is actively seeking more.
What’s a biobank, you may be asking?
A biobank in rare disease is a repository that stores biological samples (such as blood, tissue, urine, or saliva) and associated data from individuals with rare diseases. The purpose of a biobank is to provide a resource for researchers to study the underlying causes of rare diseases, develop new diagnostic tools and treatments, and ultimately improve patient outcomes.
Biobanks typically collect samples from individuals with rare diseases and their family members, as well as from healthy individuals for comparison. The samples are carefully stored and labeled, and the associated data (such as medical histories, genetic information, and demographic information) are recorded in a database.
Biobanks are critical for advancing rare disease research because they provide researchers with access to a large number of rare disease samples, which would be difficult to obtain on an individual basis. They also help to standardize sample collection and data recording, which makes it easier to compare data from different studies and identify commonalities and differences between rare diseases.
We’ll drop a link in the show notes for more info.
[source: https://research.sanfordhealth.org/rare-disease-registry]
New study discovers over 800 genes causing 60 rare genetic disorders in over 5,500 individuals, highlighting need for increased research participation for underrepresented groups
The study called Deciphering Developmental Disorders looked at 5,500 people in the UK and Ireland. They found that over 800 genes were involved in causing about 60 conditions, with three-quarters caused by spontaneous mutations. This research can help doctors make faster and more accurate diagnoses for people with these conditions.
The study also found that families of non-European ancestry had lower chances of getting a correct diagnosis, spotlighting the need for increased research participation from under-represented groups. By encouraging participation from people of diverse ethnic and economic backgrounds in research studies, scientists can gain a better understanding of how genetics and ethnicity are related, which will lead to better diagnostics and treatment options. This underscores the importance of events like EDIRA or Equality and Diversity in Research Association. Check out EP15 for more info on EDIRA.
[source one: https://www.ddduk.org/updates.html]
[source two: https://www.ndph.ox.ac.uk/news/5-550-people-diagnosed-with-rare-genetic-diseases-in-major-research-study]
AstraZeneca drops $855 million dollar drug
AstraZeneca, a drug company, has abandoned a rare disease drug candidate worth $855 million after two phase 2 trials failed. The drug was originally successful in a larger phase 3 trial, but the company found out that it didn't work as well as they thought. The drug was meant to eliminate copper from the body in patients with Wilson disease, but the phase 2 trials didn't show that it did so. The company decided it would take too long to develop the drug further and decided to stop investing in it.
Conferences
All-around likable guy, Daniel DeFabio will be at BIO Boston screening five of YOUR rare disease films at the conference. Follow Daniel on Instagram at https://www.instagram.com/disorderrarediseasefilms/.
Incidentally, BIO Boston is also on the Dazzle4Rare Community Calendar. If you’re not already subscribed to the calendar and adding YOUR community events of interest, what are you waiting for?
Visit dazzle4rare.net for the online version of the events and awareness calendars. To subscribe, email me for details.
Solve-RD
The H2020 funded flagship EU project, Solve-RD, is making strides towards solving rare disease mysteries where a molecular cause is not yet known. They’ve achieved a successful Seeding Grant project where they’ve used zebrafish to confirm AMFR as a cause for Hereditary Spastic Paraplegia. You can find this on their website.
The groundbreaking project brings all of us one step closer to finding the answers needed in rare diseases. Learn more about Solve-RD and their ongoing efforts to solve rare diseases at solve-rd.eu.
Can Gene Therapy Help Children Walk?
Duchenne muscular dystrophy is a genetic disorder that leads to muscle degeneration, resulting in young patients like Conor in this story requiring full-time wheelchair use by the age of 10 years of age.
However, with a gene therapy from Pfizer due for approval from the Food and Drug Administration next month, the future is looking brighter for children with the disease. The first patient, Conner Curran, underwent the trial treatment five years ago, which triggers muscle cells to produce the dystrophin protein that is essential for muscle function, and has since been able to retain mobility. The gene therapy does not provide a cure, but it does provide a "meaningful benefit" for more than five years, giving the boys the opportunity for a better life.
I say, “boys” here beacause according to “DMD generally affects boys because the dystrophin gene is on the X chromosome. Chromosomes are the parts of your cells that contain your genes. Boys only have one X chromosome.”
[https://www.cedars-sinai.org/health-library/diseases-and-conditions---pediatrics/d/duchenne-muscular-dystrophy.html#:~:text=DMD generally affects boys because,only have one X chromosome.]
Duchenne's affects 12,000 to 15,000 children in the US and 300,000 worldwide. It is usually genetic, passed down from a mother to a son, as the gene sits on the X chromosome, which determines sex. The disease is caused by a mutation in the dystrophin gene, which leads to the inability to produce the essential protein needed for muscle function. Without dystrophin, muscles cannot repair themselves, leading to the accumulation of damage over time.
Four companies are currently developing gene therapies for Duchenne's, and Sarepta Therapeutic's drug SRP-9001 will be the first to be considered by the FDA on May 12th. Although gene therapy is exciting, long-term prognosis for patients remains uncertain as each disease requires a distinctive gene therapy and each company has a slightly different approach. While there is still more work to do, significant improvements have been made in the last eight years, with 50 treatments in the pipeline, promising hope for the future for those affected by Duchenne's.
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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.
Wednesday Apr 26, 2023
Wednesday Apr 26, 2023
Welcome to Signalise: a Dazzle4Rare podcast. If this is your first or your fifth episode of Signalise, thanks for taking the time. You could be doing anything right now but you’re here and we appreciate that!
Every month is jam-packed with awareness days, events, and webinars. Wading through all the emails, alerts, and invitations from various organizations like Global Genes, Beacon, Genetic Alliance, and others can be a struggle. And let's not forget YOUR community - your wins, your good news!
We're introducing Rare and Relevant, your TL;DR for all things rare, associated, and noteworthy in a in a quick and easy format. If the term TL;DR is new to you, it stands for "Too Long; Didn't Read."
April is Sarcoidosis awareness month and there are some various national/international days as well. In this episode, Kerry Wong explains.
The Caring Hands Sarcoidosis organization is encouraging individuals to share their stories with the world by sending their pictures, names, and narratives to SarcoidNetwork1@gmail.com or sharing on social media with the hashtag #MakeItVisible.
Esophageal Cancer Awareness Monthhttps://www.nhsinform.scot/illnesses-and-conditions/cancer/cancer-types-in-adults/oesophageal-cancer
KIF1A Dayhttp://kfi1a.org
Hydrocephalus Association Facebook "Breaking Barriers Men’s Talk"
Hydocephalus Foundation in May "Bench to Bedside: How does a drug treatment get made?”
United Leukodystrophy Foundation event “Caregiver Online Support Group."
The Disability Badge Ban and Judy Dench
CRISPR Therapy Cured a Woman's Genetic Disease
Mom Diagnosed with End-Stage Uterine Cancer After Years of Misdiagnosis
Sims 4 Medical Wearables for Players
Samaritans Available 24 hours
UK Tel. 116 123
Text SHOUT to 85258 from anywhere in the UK, anytime, about any type of crisis.
112 is the only number you can use to access the emergency services in all EU countries.
If you or someone you know is in crisis in the US, call 911 or go to the nearest emergency room. You can call 1-800-273-TALK (8255) to reach a 24-hour crisis center, or text MHA to 741741 at the Crisis Text Line. US residents only.
112 is the only number you can use to access the emergency services in all EU countries.
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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.