Disorder: The Rare Disease Film Festival

Happy to those who celebrate and to the rest of us. Let begin. has that covered we are about You can listen on .podcast or watch it on Guest on why we can’t go on date nights.

You can listen to Pain Points as a podcast! On .podcast

This article gets into why I work at Global Genes, grieving a diagnosis, grieving the loss of Lucas, how The Disorder Channel was founded and more. Volume 8 page 22 Thank you Ceridwen Hughes Same but Different

www.samebutdifferentcic.org.uk/raritylife

Our tradition. image description: a cooling rack with frosted Christmas cookies. The most prominent in the foreground is a gingerbread man shape modified to be a boy in a wheelchair.

https://twodisableddudes.com/237-the-vital-role-of-caregivers-in-rare-disease-advocacy/

237 - The Vital Role of Caregivers in Rare Disease Advocacy - Two Disabled Dudes Effie Parks and Daniel DeFabio discuss the pivotal role of the caregiver’s voice in healthcare, particularly in rare disease.

We screened our film “Life After Diagnosis Day” in Amsterdam this week, and really could you hope for better feedback or more impact?

This is a great deep resource.
And if you listen as audio I think it sounds pretty good too.

NeuroJourney (https://neurojourney.org) uses four phases of a full life to help you understand the challenges you might face, anticipate the conversations you may have, and prepare for the decisions you may need to make as you determine goals of care for your child.

During your child’s life, you may find yourself moving back and forth between phases, straddling two, or even skipping a phase. Ultimately, regardless of its length, your child’s life will have a full arc enabled by care and love.


Cincinnati Children's Seven Hills Foundation

AlwaYs so good to see Nikki and of course my ride or die .podcast

New 30 minute film just added on also don’t miss “Aubsessed” and “For Katy”.

The hard work of gets so much better when you can surround yourself with award winning like .real.edwards .is.we

Great to have some face to face time with GG OG

for

Grateful to Dazzle4Rare for the shout out to our new film "life After Diagnosis Day" and Pain Points in this episode of Signalize podcast. (at about 13 minutes in).

EP31: September Awareness Days, NORD Designates New Rare Disease Center, and Listener Voicemails | Signalise: a Dazzle4Rare Podcast In this rare and relevant episode Kimberly delves into various awareness days and months in September. We also talk about upcoming webinars and conferences, share industry resources, and highlight the inspiring "Life After Diagnosis Day" follow-up available on The Disorder Channel. Stay tuned for vo...

In the news today: My boy as pretty much the poster child for rWGS and NBS.
In their trial of rWGS for new borns regardless of symptoms:
” we’re 46 babies in, and 13 babies – 29% – have a genetic disorder or risk for a genetic disorder."

How Rapid Whole Genome Sequencing Can Change the Rare Disease Game for Every Newborn If there’s one thing we know about rare diseases, it’s that their prevalence is not so rare. | The rare disease journey can be long and difficult. rWGS could offer newborns a greater chance of successful diagnosis and intervention at birth.

We are so often asked for help turning a rare disease story into a film. This program with is one way we help. We're excited that 5 new films from this program will screen this month in San Diego at The films are:
From the Heart
Born to be Heard - Lesley's story
Glitching with Nick
Keep It Moving
Miss Diagnosis
--and they cover including and 2 discuss the program from Global Genes.

A double dose of hope. Can you bottle hope for thank you. nice job .valley

Today is grief awareness day. And we have some videos that can help. "Grief: Living with Uncertainty - Finding ways to Cope & Build Resilience" -

Panel for the KCNT1 Community_ Acknowledging Grief and Uncertainty This is "Panel for the KCNT1 Community_ Acknowledging Grief and Uncertainty" by KCNT1 EPILEPSY FOUNDATION on Vimeo, the home for high quality videos and…

https://www.youtube.com/watch?v=7DkLH8_hu5o

Today is grief awareness day. And we will be posting a lot. Fortunately we have some videos that can help. Like when .podcast talked about types of grief and You can find it on YouTube or a reminder that we grieve things other than death. Any of us with a diagnosis in our family are grieving.

Once Upon A Gene TV Ep 05 Rare mom Becky Benson is the guest. Plus Effie brings on her favorite geeky rare disease dad to talk WandaVision and Super Powered Grief. ...

You can hear Daniel join the Two Dudes and Michelle Rivas and Eve Dryer to talk about the power of the patient voice recorded at with Mentioned .podcast luke rosen

Now available on all the 2DD Podcast feeds!
Episode #224 “The Power of the Patient Voice" at BIO Int’l
https://twodisableddudes.com/224-the-power-of-the-patient-voice-at-bio-international/
We followed that panel with 5 of our films on

Just added a new episode of to this one is on with

Stream it free on Roku or FireTV

Now streaming on YouTUbe, Roku and FireTV. We realize not every can get our channel if they don't have Roku or FireTV, so we've added our newest film to YouTube. It is also streaming on The Disorder Channel. “Life After Diagnosis Day” A new film on getting through the devastating news and what 11 families did next.

.podcast

Are you following the awareness around

Check it out. And here's just one of the Pain Points many rare disease families face: Air Travel Trouble.

Rare Disease. Pain Points - Air Travel Troubles The skies can be not so friendly when you have a rare disease. Despite ADA requirements it's too hard to manage for many of us. Pain Points is a short show...

We've got an important new episode of Pain Points on The DISORDER Channel. Or you can watch it right here or on You Tube. And we're not just complaining, you can do something about this one. Contact your legislators here. https://www.votervoice.net/MDA/BlogPosts/5136

https://www.youtube.com/watch?v=_l7PMZsxtcE

We just added a great new episode of PAIN POINTS streaming free to about how and and make air travel too difficult despite the protection the is meant to offer. Guest Mandy Korst provides the example of a person with all the gear needed for Muscular Dystrophy Association Cystic Fibrosis Foundation

Air Travel Update: US House Passes FAA Reauthorization Today, by a vote of 351-69, the US House passed legislation to reauthorize the Federal Aviation Act (FAA), which includes the most transformative air travel accessibility reforms since the 1980s! Reauthorizing the FAA is a “must pass” bill and...

Simon’s is doing great work. So kind of them to spend a moment sharing what we do.

Rare Disease on TV — The Disorder Collection Home of The Disorder Channel a streaming TV channel (OTT) dedicated to rare disease patient stories. Films and videos of their struggles and quests for cures. Fiction and documentaries, shorts and features.

It’s such a treat to spend some time talking with about

With the wonderful at the by Patient Authentic hosted by don’t mind those wine barrels we were working.

Day 2 of looking forward to Karmen of talking with Luke Rosen today at 4pm.

Getting ready to talk about the power of the patient voice 1pm today at with and we follow that with 5 of our films on

Want to listen to Daniel talk about life as a rare disease dad for two hours? Who wouldn't?

Life with Jamie and more. • A podcast on Spotify for Podcasters Dads who are caregivers of their kids which have special needs/disabilities have a unique perspective and experience of how we face the challenges raising our ‘non typical’ kids. Steve creates safe space to hear those journeys. It’s real, it’s life, it’s how it is. https://linktr.ee/lifewi...

This one is huge for me (Daniel). Perhaps as a means of catharsis or to raise awareness, Polish filmmaker Tomasz Sliwinski made a short documentary after his son was diagnosed with a rare deadly disease CCHS. Kids with CCHS stop breathing if they fall asleep. That film “Our Curse” went on to be nominated for an Academy Award in the short documentary category in 2015.

That same year and for the same reasons Daniel DeFabio also made a short documentary on the rare deadly disease his son faced: Menkes Disease. That film led DeFabio to start Disorder the Rare Disease Film Festival in 2017 in Boston. Both films were screened at the festival. But because the New York Times held the streaming rights we waited YEARS to add this gorgeous film to The time is finally now. Stream it free on your Roku or FireTV. Tomasz Śliwiński and thank you Fumi Kitahara for introducing me to to Tomasz April Harrah

We are thankful for the support we receive from Horizon to help us share

Our next workshop to teach you how to tell your story in a short documentary is on May 31 at 3:30. pm EST.

5 of our films are screening and Daniel will speak on a panel June 5.

Menkes Disease: Finding Help & Hope
Bad days, Good Days, Rare Days
Tess Is Not Alone: A USP7 Story
Celebrating Caren
Protein Kills Us

From the director of our most watched film for the last 2 years, "Life and Atrophy", comes a new film about families who have children with SCN2A and their search for treatments along with the research and family foundation community.

Have you been wanting to watch Pain Points but you don't have a Roku or FireTV to watch it on?

We just added two of our episodes to YouTube.

Topics: Handicap Parking Spaces and Why it's hard to answer "How are you?" Check them out.

Pain Points - Parking Problems Pain Points. I Block the Lines. Each episode we present one example of what makes living with a rare disease painful or difficult. Guest: Billie Short, mo...

Today is awareness day. And the donations this month to IFOPA could get doubled by a matching grant.
International FOP Association (IFOPA)

In your experience of rare disease what are the things that happen all too often? The things you wish others understood? The things you wish you (or they) could stop?

Tell us in the comments or a message.