mental health matters - 1023.mp4
July is National Minority Mental Health Awareness Month!
We recognize the unique challenges faced by minority communities in accessing mental health care and the importance of culturally competent mental health services. Mental health knows no boundaries, and everyone deserves access to the support they need.
Join us in breaking the stigma, raising awareness, and working toward a future where mental health care is accessible and inclusive for all.
Learn about our efforts at https://buff.ly/41oqUVV
#MinorityMentalHealth #MentalHealthAwareness
peer support.mp4
Our Peer 2 Peer program shared the following tips and activities with our peer families. We thought you might enjoy them too!
Tips for 1:1 Conversations
Shared Journaling: Start a shared journaling activity with your family. Each week, take turns writing about your thoughts, feelings, and experiences. This practice not only helps in expressing emotions but also deepens your connection as you learn more about each other’s thoughts and personal feelings.
Tips for Caregivers and Couples
Date Nights at Home: Schedule regular date nights at home. Whether it’s watching a movie, cooking a meal together, or simply talking without distractions, dedicating time to nurture your relationship is crucial to staying connected.
Tips for Siblings
Creative Expression: Let siblings choose an activity like painting, drawing, or another fun idea. Create a safe space for them to express their feelings through art and creative play. Add a little extra fun by allowing them to invite a friend!
A Community of Support: Additional Tip
Virtual/In-person Coffee Chats: Organize informal virtual coffee chats where community members can connect in a relaxed setting. These chats offer an opportunity for casual conversation and building friendships.
These tips and activities aim to enhance peer support within each category, promoting self-care, mental health, and community building. Feel free to customize them to better suit your needs and goals!
Visit https://buff.ly/3slcs4e to learn more!
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One Minute Mondays are back in rotation! Today, I want to talk about being supportive.
Enjoy 60 seconds (120 seconds today) of Being Rare!
#podcast #oneminutemonday #beingrare
Ep 99. Being Rare Podcast
"We also have to embrace the reality that it [black maternal mortality] stems from systemic and structural racism and implicit bias from our healthcare space".
Check out the latest episode of the Being Rare Podcast!
Watch on YouTube https://buff.ly/4bacAEN
Listen in https://buff.ly/3UHF6bL
#podcast
Ep 99. Being Rare Podcast
"A lot of times the solutions we give to people are unrealistic and we have figure out a way to make the healthcare system, the healthcare providers closest to them [patients] better at providing care".
Check out the latest episode of the Being Rare Podcast!
Watch on YouTube https://buff.ly/4bacAEN
Listen in https://buff.ly/3UHF6bL
#podcast
Ep 99. Being Rare Podcast
"We have to do better at missed opportunities to provide better care".
Check out the latest episode of the Being Rare Podcast!
Watch on YouTube https://buff.ly/4bacAEN
Listen in https://buff.ly/3UHF6bL
#podcast
Language Matters in Genetic Counseling
In this Being Rare Podcast episode, we're challenging the narrative surrounding Trisomy 18 diagnoses. Join us as we discuss replacing the "lethal" label and shifting the narrative with understanding, compassion, and support.
Listen now and spread the word! https://buff.ly/4aHp8n8
Breaking Down Trisomy 18
Breaking down Trisomy 18 and its impact on families who receive the diagnosis.
Check out the full episode: https://buff.ly/3TFgP43
There's a risk of complication with any pregnancy.
"There is a risk of complications with any pregnancy."
Pregnancy-related deaths occur due to several factors, including negligence. And, especially among black and brown women.
"The leading underlying causes of pregnancy-related death include:
Mental health conditions (including deaths to suicide and overdose/poisoning related to substance use disorder) (23%)
Excessive bleeding (hemorrhage) (14%)
Cardiac and coronary conditions (relating to the heart) (13%)
Infection (9%)
Thrombotic embolism (a type of blood clot) (9%)
Cardiomyopathy (a disease of the heart muscle) (9%)
Hypertensive disorders of pregnancy (relating to high blood pressure) (7%)" - Source: CDC
"At the national level, US MMRs (or maternal deaths per 100 000 live births) are 2 to 4 times higher in the non-Hispanic Black population than in the non-Hispanic White population. Source: NIH
Check out the full podcast episode: https://buff.ly/4cFhlI8
mental health matters - 1023.mp4
MENTAL HEALTH MATTERS: Any person. Any diagnosis. Anywhere.
A rare diagnosis can create considerable strain and stress for the patient and their parents or caregivers. Additionally, siblings have a similar burden because parents might spend more time with their child with a disability. The enormous burden of a rare diagnosis can decrease a person’s ability to provide care, impacting the patient’s health, the parents, siblings, and the overall functioning family. To manage these challenges, families report the need for mental health care for themselves and their children, but many families go without these services. Understanding barriers to mental health care for families with rare diseases is critical to our development of practical mental health solutions.
Mental Health Matters is a community-driven mental health initiative aimed at promoting awareness, de-stigmatization, and support for individuals dealing with mental health challenges. The initiative focuses on fostering a compassionate and inclusive environment where people can openly discuss, learn about, and seek help for their mental well-being.
Learn more https://buff.ly/41oqUVV
2023 LEAP Summit Welcome (1).mp4
Our LEAP Program is an advocacy and education initiative committed to enhancing health literacy among patient populations. Our LEAP program empowers individuals to make informed and self-appropriate health decisions. The program recognizes that navigating the complexities of healthcare, understanding financial implications, and accessing community resources can be challenging. By focusing on health literacy and community education, LEAP aims to equip individuals with the knowledge and skills necessary to actively participate in their healthcare journey.
Key Components of the LEAP Program:
Comprehensive Health Education: LEAP provides accessible and comprehensive health education materials tailored to diverse audiences. From understanding medical terminology to decoding health insurance plans, we aim to demystify complex information, making it accessible to all.
Interactive Workshops and Webinars: We organize interactive workshops and webinars to facilitate hands-on learning experiences. These sessions cover a range of topics, including navigating healthcare systems, managing healthcare costs, and leveraging community resources for optimal health.
Patient Advocacy: Advocating for patients’ rights and ensuring their voices are heard in healthcare decisions is a fundamental aspect of LEAP. We empower individuals to be advocates for their own health, providing resources and guidance on navigating the healthcare system, understanding their rights, and actively participating in decision-making processes related to their well-being.
Community Engagement: LEAP encourages community participation through local events, support groups, and outreach programs. By fostering a sense of community, we aim to create a supportive environment where individuals can share experiences, learn from one another, and collectively build health literacy.
Digital Resources: In the digital age, access to reliable information is crucial. LEAP offers a variety of online resources, including
Teal and Yellow Minimalist Happy Woman's Day Facebook Post.mp4
Celebrating the phenomenal strength, resilience, and spirit of women everywhere! We are forces of nature, barrier breakers, future shapers, and changemakers. Together, we rise, empower, and uplift one another!
Here's to the phenomenal women making a difference in the world! Go get 'em, girl!
Happy International Women's Day!
#InternationalWomensDay #PhenomenalWomen
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Happy Rare Disease Day!
Celebrating the Legacy of Martin Luther King, Jr.
Today, we acknowledge the intersection of Martin Luther King, Jr.'s legacy with the challenges faced by those with rare diseases. Let's unite for healthcare equity and strive for a world where everyone receives the care they deserve.
Navigating the Holidays - Made with Clipchamp.mp4
The holiday hustle might not align with our individual health care needs. In this mini episode Sarita shares a few tips that might help with navigating the holiday season.
Don't forget to subscribe to Being Rare Podcast and follow along wherever you listen to your podcasts. Enjoyed this mini episode? Leave us a comment and review!
#podcast
https://buff.ly/3NdNFXg
20231128140609
Today is Giving Tuesday! We hope you'll consider adding the E.WE Foundation to the list of nonprofits you support!
The E.WE Foundation is a global healthcare advocacy organization. We provide resources and support to families with rare diseases like Edwards Syndrome and other medically complex diagnoses.
Learn about our core programs LEAP, ZEBRA, and STRIPE by visiting our website!
Ways to give:
- Donate online at buff.ly/3QL67q2!
- Host your own E.WE Foundation fundraiser on Facebook or Instagram
- Mail a check to PO Box 6391, Huntsville, AL 35813
We appreciate your continued support!
Peer Support Session Announcement (1).mp4
Join us on Friday, October 27th at 5pm CST for our Peer 2 Peer Online Support Group!
Peer 2 Peer provides support and connection for patients, caregivers, and anyone else in the rare disease community or those with medically complex diagnoses. Registration is required!
Visit https://buff.ly/3slcs4e to learn more and sign up!
We look forward to seeing you and offering a safe space for sharing and support!
2023 NORD Breakthrough Summit.mp4
Reimagining what is possible, together at the 2023 NORD Breakthrough Summit!
World mental health day 2023.mp4
Today, we stand together to break the silence, shatter the stigma, and spread the light of awareness on World Mental Health Day! 🌍💚It’s okay not to be okay, and seeking help is a sign of strength.
Together, today and every day, we can create a world where everyone's mental health matters!💚✨
#WorldMentalHealthDay #MentalHealthMatters #BreakTheStigma #YouAreNotAlone #TogetherWeCan #EndTheSilence
11 seconds.. #podcast #newbornscreening #realtalk
