March 15, 2023 • 20 mins
Welcome to this episode of Signalise: a Dazzle4Rare podcast. Today, we’re traveling the road to EDIRA. While EDIRA may sound like a fantasy realm, a golden landscape where triumph, resilience, and hope hang in the air, it is very much real. In the face of adversity, rare disease communities continue to perservere, despite circumstances in which their voices are not always heard or valued. Communities have been looking for a way, a place, to find Equality and Diversity in rare disease spaces with research and clinical trial participation as well as in drug development, having a place at the proverbial table. While big stakeholders across healthcare centered spaces are starting to understand the importance of patient inclusion, there is still a disparity between what is logically known about including patients versus what they are doing to ensure unique patient perspectives are included.
As Sam so aptly said during the Rare Disease Day live stream, "We are the experts in our own conditions." EDIRA is a step towards including patients as experts in their own conditions, and it is a step towards a brighter, more inclusive future.
Episode resource links:
- Spectrum 10k Consultation
- Update: Statement on NHLBI decision to resume participant enrollment in the Pilot and Feasibility Study of Hematopoietic Stem Cell Gene Transfer for Sickle Cell Disease
- Full "Road to EDIRA" Live Stream Webinar on Rare Disease Day
- EDIRA Event Brite tickets
- Sponsor: Costello Medical "Giving Back" programme
- Sponsor: COUCH Health
- Speaker: Dr. Natasha Radcliffe
- In-Conversation with Elizabeth Davenport
- In-Conversation with Hazel Kim from Chinese Autism UK
- Event Ambassador: Glenn Webbe
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.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
Hi I'm your host, Kimberly Thomas Tague andyou're listening to signalise Dazzle4Rare
(00:00):
podcast. Whetheryou're a patient advocate,
caregiver, or clinician,signalise as your source
for good news, personalstories, events, and
the things that rare andassociated communities
care about, follow signalise and Dazzle4Rareat D A Z Z L E the number four R A R E.
on Facebook, Instagram and Twitter, wherewe'll post episode links, updates and more.
Today we're talking about the road toEDIRA. While idea may sound like a fantasy
realm, a golden landscape or triumph,mozillians and hope hang in the air.
It is very much a realplace in the face of
adversity, rare diseasecommunities continue
to persevere despite circumstances inwhich their voices are not always heard or.
Valued communities havebeen looking for a way,
a place to find equalityand diversity in rare
disease spaces withresearch and clinical trial
participation, as wellas drug development.
Having a place at the proverbial tablefor big stakeholders across healthcare
centred spaces are starting to understandthe importance of patient inclusion.
And there is still a disparity between whatis logically known about including patients
versus what they are doing to ensure uniquepatient perspectives are included before
we get deeper into this story, I have twoexamples for you, real world examples of
how consultation with the actual communitythe research is centred around can be miss.
Thing the first example I experiencedpersonally, the second happened
in 2021 in the United States as aparent of a young child with autism, I
was interested in participating inthe Spectrum 10K project organised by
the University of Cambridge to betterunderstand the genetics of autism.
I found out about thisprogramme through one of their
programme partners. I hadhoped they might explore
the potential genetic linkbetween autism and allies
demo syndrome, or perhapsaddress it in some way.
EDS and autism are often comorbidconditions. I was excited to learn
more about the genetics in someway and how this might be explored,
and I wanted to know if thisis something I could share with
families in our community whohave children, who are my son's age.
However, I received ane-mail stating that the study had
been paused due to lack ofconsultation with the autism.
Community at the timeof writing, this study has
been in the consultationphase since late 2021.
One the next example comes tous from the United States. In 2021,
the NIH had to pause a clinicaltrial for a new drug for sickle
cell disease due to, in theirwords, an abundance of caution.
In December of 2021, a statementwas released saying that the.
NHBLI took variousmeasures to conduct a safety
assessment to ensurescientific integrity and
in their words,soliciting input from
multidisciplinary scientificand clinical perspective.
Actives as well as patient perspectives.I'll put links to these examples in the show.
Notes we don't oftenhear these stories.
Why weren't these communitiesconsulted and included in the
research when it was meant tobe centred around their conditions?
This is where our storybegins and where we
meet Doctor SondraButterworth. Sondra asked the
same question why aren'tpatients and the people
affected being includedin these discussions?
She took her questions to her colleague,Doctor Andrew Mitchell of the University
of Chester, as you're about to hear.We're not travelling to a utopia far, far
away, but a real patient centred experiencefor our communities. Idea stands for
equality and diversity in researchassociation and puts rare disease patients.
And underserved patientcommunities at the forefront.
We will follow the footsteps of DoctorSundar Butterworth and her colleagues
at RareQol and Sam Fillingham, founderof Poland syndrome support and Network
UK, as well as the cast of diversecharacters in this story as they work to
bring this concept of radical changeand inclusion and rare disease research.
To our reality.For those of you who don't know what the Dora.
Is about, I'll.
Start with the acronymEDIRA. So it's equality,
diversity and inclusiveresearch association.
And the idea isthat people with.
Rare conditions, but many ofthem felt unseen, invisible, not heard.
And so on and excluded. It was thinkingabout how could people? Like all of.
Us be more included in therare disease space when it
comes to being involved inresearch that impacts on policy.
Development and things like.
That they approachdifferent people and said do
you know much aboutinclusivity and inclusive?
This image and would youlike to be involved in just some
discussions about it? Andeveryone said yes, they just said yes.
You know, we we hadthree meetings and the
meetings involved discussionsaround the concept of
inclusive practise,inclusive research and from
that we wrote theconversations and discussions.
And then myself, alongsidewith associate Prof.
Said Doctor Andrew Mitchell from theUniversity of Chester. We then decided to put
in a proposal to get a fix to do a smallstudy, which we've done, and then there
was so much information, so we thisis enough for a conference and then the
conference itself is going to be aroundcommunities of practise which will include.
Actors, as in health, social care,education, academia, policies. So we want
to bring people in those practises intoour space and we're inviting different.
But it's so we're changingthe narrative. We're changing
the power dynamic becausetoo often we're invited
into other spaces wherewe don't really have much of
a say or control of whathappens when we go to places.
So we wanted to beable to create this safe
space for us and thenhave others so that we can.
Have these discussions about how to includeus, those of us with rare conditions,
those of us from diverse backgrounds,those of us who are underserved.
Because of economic differences,those who are of us who are
excluding, that's whatessentially the conference is about.
As you've heard fromSondra's, idea is not only very
much grounded in reality,but also the data that Sondra
and her colleague uncoveredand resulting study at the
heart of Aderra is the ideaof equality and diversity.
Each person's experience withrare disease is unique and their
individual and community needsmust now and going forward.
To be addressed, ourcommunities deserve a space
where people fromdifferent backgrounds, faiths
and perspectives cometogether to share their
knowledge gained throughtheir lived experiences.
So what is inclusion or exclusionand how are patients impacted?
Very often I get a little bit frustratedby that. I think people feel that
when I'm talking about exclusion orinclusion, I'm just talking about race.
Obviously that is part ofit, but there's so many other
people and it's not alwaysjust about race, but there's.
So many other. People who are excluded they,for example, may be invited to take part.
In a study which is in another city veryoften in the major cities, just get in. There
is a major thing, just a cost. OK, maybe getreimbursement, but that's after the moon.
Has been spent in the1st place, so there's there's
lots of different reasonswhy people are excluded.
Now I'd like to introduceSam Fillingham, founder of
Polland Syndrome Support Network UK. Sam's experience
with Polland syndrome, a rare indifference condition,
started when her sonwas born 14 years ago.
Sam quickly saw that isolationthat parents and children affected
by the condition can often feelwhen receiving the diagnosis.
And continuing forwardto find a treatment plan.
Since her son's birth,Sam has worked tirelessly
with the global pollensyndrome community
to help bring their voices to the forefrontof conversations around social inclusion.
With a limb difference, bodyconfidence well-being, as well as
touching on mental health withinthe community of parents and patients.
It was really interestingwhen some just first
started, started talkingabout adara and thinking about
inclusion, and naively Ididn't really think that we were
being like excluded onthe surface of it. I knew that.
We didn't haveequity in our care.
Yeah, but that concept of our communityas underserved and excluded wasn't
really at the forefront of my minduntil I started talking to Sondra about it.
And then it was really just becamepivotal in my mind then of of course being
excluded, like the people that Sondrahas invited into these communities.
The researchers, thefarmer, the industry, those
are people that we can'tget a foot in the door with
that we can't get to theplace at the table with
people like that to improvethings for Poland syndrome.
And it was just really excitingto hear about a new way of doing
things where we can be includedand we can start opening the door.
To communities like ourswith Poland syndrome.
As I've heard from Sam, it wasn'timmediately obvious that her community
could be considered a communitythat was excluded or underserved.
Together, Sondra and her colleagueswith Sam and her hard earned parent
of a patient and communityorganising expertise, set out to bring
together all stakeholders to talkabout the challenges facing new disease
patients and how to find solutionsthat would improve their lives.
Bringing together thosedifferent experts and
regarding ourselvesas experts in that space
as well is so newcompared to other work that
we've done before thatso to put ourselves on.
On a bit.
Of a parapet of like look we.Are the experts you do need to.
Come to us now.
To find out about thesediseases and you're the experts in
your field. And please cometo us and start listening to us.
We are the experts in our ownconditions many times as patients or
parents, we've been disregardedand our own lived experiences have not
begun in the time and attentionneeded to help uncover the ways in
which we can work together withclinicians and with other stakeholders.
More collaboratively.
The idea is we have thediverse in that, so we have
some with the rareconditions and with the carrier.
From a rare disease familyand a parent of someone with
a rare condition. So weare a community of practise.
Just the three of us andthose of our network, if
you have a question, forexample around what does
inclusion look like for us,we may have a very different
response to that questionthan the farmer industry.
Or to someone in inacademia, what does inclusive
research or research practisemean to them? It's ethic.
It's how to engage. It's aboutCo creation, it's about funding. It's
a very different sorts of responses,but at some point there where
there be differences, there willbe similarities and that's where we
want this communities of practisemodel to work at the conference.
So thus far in our journey,knowing what we know, what
type of space, what type ofconference will EDIRA be?
We wanted to make itreally inclusive. We're
considering people withvisual impairment and yes, we
wanted people who, forwhatever reason there might
be mobility reasonsthey can't come in. Period.
That that we didn't.
Want them to feel as though, oh, I'll go.To the poor.
Relation. I'll go to the online one.Will be as good.
Yeah, it will be greatbecause we're just repeating
the same thing, but it willbe a different audience.
The discussions andwhat comes out of it may be
different, but we stillwant a very rich event.
During the conference, Sam Fillinghamwill be leading an in conversation
piece with Elizabeth Davenport,Elizabeth or Beth to the Raquil community.
Network is a rare disease advocate and complexcommunity case worker with over 14 years
of experience oftenworking in underserved
and disadvantaged localcommunities in the UK.
She is the lead consultantfor rare Community network
at RareQol and Advocate forNPUK and kinship support
Officer at the kinship
Charity. In these days of hybrid inperson and other forms of presence in
conferences, Sondra explains themethodology behind the conference format.
Conversation around whether to haveit as a hybrid or whether to have it as
two separate events, and because ofthe nature of what we're trying to achieve.
Because there's a lot goinginto this conference, it's going
to be a really comprehensiveconference. It felt it would be
too much to have as a hybridattending as a virtual attendee
at a conference. And you feelas though you're on the outside.
Looking into a goldfish bowl andyou're not really engaged, so we wanted it
to be those who were in person engagedand those were more online engaged.
The conference is sponsored by a few UK basedcompanies who will be bringing their own
unique skills and teamsto make the experience
as inclusive andinformative as possible.
There will also be 2 audio content piecesthat will be hosted by yours truly, and
Sondra Butterworth, including two specialguests that have yet to be announced.
So please do keep your eyeson social media and these will
be added value content aspart of the robust content offered.
At the EDIRA conference, in additionto these various types of content
seminars, meetups, and other opportunitiesfor our communities to come together.
And also engage withstakeholders. There will be
seminars and activitiesplanned between the end
of the EDIRA 2023conference and the results in
study presented at theEDIRA 2024 conference.
That the online eventand the in person event are
going to be replicas ofeach other. You won't.
There will be.
The interviewing conversation with wecan have a panel of experts or in the in
the inclusive space talking about inclusion,but from different perspectives, and
then they're going to have the community ofpractise workshop itself, where different
people from different communities,we're all gonna be talking about inclusion.
We're gonna have graphicalmetaphors for people to use and.
Take after the conference. Once theconference is over, it's not the end because
we want to carry on and have 4 seminarsand the online conference finished.
The platform will be open toall attendees to be able to attend
different activities and to continuethe communities of practise.
As we move closer to understandingEDIRA and taking this journey.
Together we have an ever expandingcast of characters such as Doctor
Natasha Radcliffe of Couchhealth, Doctor Emiline from Cardiff
University and the Michael J. FoxFoundation and associate professor
Doctor Andrew Mitchell, as wellas other speakers to be announced.
Part of what we're doing is we'regonna be getting all the the dialogue and
the information and writing everythingup as a paper from the conference.
And that's a reallyimportant aspect. We can't
announce the keynotespeaker. Yeah, those are
the main things thatwe're going to be doing.
We will be feeding backsome of the research.
It's been.
Happening. So we'vegot, for example, the
projects that we're doingin work while is working
with Doctor Emma Lanefrom Cardiff University and
it's with a project that'sfunded by Michael J.
Fox Bond Foundation intoParkinson's and that's about inclusion.
Emma is gonna be speakingabout some of the work around that.
Then we've gotone of our sponsors.
From coach health. Doctor NatashaBuckley. And she's been doing some.
Work on couch.Health have been doing some work around.
And inclusion andworking closely with farmer
companies, particularlyin America, working
with different diverse communities andgetting them involved in clinical research.
We've got associate Professor AndrewMitchell. He will be talking about some of
the work around frontiers for psychology.So that is a publication and we've had.
A call out.For inclusive.
So hopefully we can share some ofthe information from those as well, so.
There's a lot.
The value that the conference brings toour UK and global revises community is not
only in the initial idea conference, but itsframework, its continued use of an online.
Platform to continue toengage participants between
events and seminars, andthe final study which will be put
together by our communitieswith Doctor Sondra Butterworth
and her colleagues to bepresented at the 2024 conference.
We want to be able tocreate more work after
the conference to beable to create a resources.
In addition to Edera, there willbe more work done collaboratively
with Rorqual and PolandSyndrome Support Network UK.
We recently announced.
our Sondra partnership with PIP-UKand RareQol, which is super exciting.
So we've been part of the RareQolnetwork for a while now, and Sondra and
her wonderful team have beenhelping me and Pipe UK for well over 12
months now, including with someinterns from Chester University last year.
And many other pieces of.That that they've supported me with so.
It's really wonderfulthat we've been.
Able to formalise our partnershipthis year moving forward.
So we've sat down andhad a look at where we have
commonality across allour pieces of work and
what we can do to helpeach other. So I'm working
on a medical symposium for Polland syndrome.
Where I want to bringtogether surgeons and experts
in Poland syndrome tolook at early treatment plans
because we've got alot of issues there in our
Community and Sondra isgoing to be part of that panel.
As these discussions, activitiesand collaborations take shape, we
can be assured that more opportunitiesare coming to our Community.
What is currently in the works has thepotential to be a transformative experience
for those who choose to travel this roadto equality and diversity and research in
in other areas where we have traditionallybeen excluded or underserved as a wider,
diverse and intersectional community. Atthis time, free tickets are being offered.
When the supply folks you are interestedcan cheque out the virtual Eventbrite
page, which I'll include in the show noteswith other resources for this episode.
And the journey to Madeira began withthis simple question. Why aren't patients
and people affected by rare conditionsbeing included in the discussions
and research ideas started as a questionturned into a series of discussions
and is becoming a patient centred shiftin the power dynamic between patients.
Industry stakeholders,EDIRA is our space to
create our opportunitiesfor those who wish to work
collaboratively and whereeach experience with rare
disease is unique. As uniqueas these diverse communities.
Sam Feldman has shared howPipek have benefited from the
work being done with RareQolnetwork and now with EDIRA.
Together, Sondra andher colleagues Sam and the
other experts we mentionedhere today will set out to
create the change thatwe need and find solutions
to improve our experiences.As Sam so aptly said.
We are the expertsin our own conditions.
(00:20):
Adoura is a step towards including patientsas experts in their own conditions,
and it is a step towards a brighterand more inclusive and diverse future.
Thanks for listening to this week'sepisode of Signalise, a Dazzle for our
podcast. To stay up to date on thepodcast and Dazzle Ferrere follow us on
Facebook, Instagram, and Twitter at DA Z Z L E, the number 4 RARE, R A R E.
And finally, if you liked this episode,share it with a friend and tag us.
On social media platforms.
Hi I'm your host, Kimberly Thomas Tague andyou're listening to signalise Dazzle4Rare
(00:00):
podcast. Whetheryou're a patient advocate,
caregiver, or clinician,signalise as your source
for good news, personalstories, events, and
the things that rare andassociated communities
care about, follow signalise and Dazzle4Rareat D A Z Z L E the number four R A R E.
on Facebook, Instagram and Twitter, wherewe'll post episode links, updates and more.
Today we're talking about the road toEDIRA. While idea may sound like a fantasy
realm, a golden landscape or triumph,mozillians and hope hang in the air.
It is very much a realplace in the face of
adversity, rare diseasecommunities continue
to persevere despite circumstances inwhich their voices are not always heard or.
Valued communities havebeen looking for a way,
a place to find equalityand diversity in rare
disease spaces withresearch and clinical trial
participation, as wellas drug development.
Having a place at the proverbial tablefor big stakeholders across healthcare
centred spaces are starting to understandthe importance of patient inclusion.
And there is still a disparity between whatis logically known about including patients
versus what they are doing to ensure uniquepatient perspectives are included before
we get deeper into this story, I have twoexamples for you, real world examples of
how consultation with the actual communitythe research is centred around can be miss.
Thing the first example I experiencedpersonally, the second happened
in 2021 in the United States as aparent of a young child with autism, I
was interested in participating inthe Spectrum 10K project organised by
the University of Cambridge to betterunderstand the genetics of autism.
I found out about thisprogramme through one of their
programme partners. I hadhoped they might explore
the potential genetic linkbetween autism and allies
demo syndrome, or perhapsaddress it in some way.
EDS and autism are often comorbidconditions. I was excited to learn
more about the genetics in someway and how this might be explored,
and I wanted to know if thisis something I could share with
families in our community whohave children, who are my son's age.
However, I received ane-mail stating that the study had
been paused due to lack ofconsultation with the autism.
Community at the timeof writing, this study has
been in the consultationphase since late 2021.
One the next example comes tous from the United States. In 2021,
the NIH had to pause a clinicaltrial for a new drug for sickle
cell disease due to, in theirwords, an abundance of caution.
In December of 2021, a statementwas released saying that the.
NHBLI took variousmeasures to conduct a safety
assessment to ensurescientific integrity and
in their words,soliciting input from
multidisciplinary scientificand clinical perspective.
Actives as well as patient perspectives.I'll put links to these examples in the show.
Notes we don't oftenhear these stories.
Why weren't these communitiesconsulted and included in the
research when it was meant tobe centred around their conditions?
This is where our storybegins and where we
meet Doctor SondraButterworth. Sondra asked the
same question why aren'tpatients and the people
affected being includedin these discussions?
She took her questions to her colleague,Doctor Andrew Mitchell of the University
of Chester, as you're about to hear.We're not travelling to a utopia far, far
away, but a real patient centred experiencefor our communities. Idea stands for
equality and diversity in researchassociation and puts rare disease patients.
And underserved patientcommunities at the forefront.
We will follow the footsteps of DoctorSundar Butterworth and her colleagues
at RareQol and Sam Fillingham, founderof Poland syndrome support and Network
UK, as well as the cast of diversecharacters in this story as they work to
bring this concept of radical changeand inclusion and rare disease research.
To our reality.For those of you who don't know what the Dora.
Is about, I'll.
Start with the acronymEDIRA. So it's equality,
diversity and inclusiveresearch association.
And the idea isthat people with.
Rare conditions, but many ofthem felt unseen, invisible, not heard.
And so on and excluded. It was thinkingabout how could people? Like all of.
Us be more included in therare disease space when it
comes to being involved inresearch that impacts on policy.
Development and things like.
That they approachdifferent people and said do
you know much aboutinclusivity and inclusive?
This image and would youlike to be involved in just some
discussions about it? Andeveryone said yes, they just said yes.
You know, we we hadthree meetings and the
meetings involved discussionsaround the concept of
inclusive practise,inclusive research and from
that we wrote theconversations and discussions.
And then myself, alongsidewith associate Prof.
Said Doctor Andrew Mitchell from theUniversity of Chester. We then decided to put
in a proposal to get a fix to do a smallstudy, which we've done, and then there
was so much information, so we thisis enough for a conference and then the
conference itself is going to be aroundcommunities of practise which will include.
Actors, as in health, social care,education, academia, policies. So we want
to bring people in those practises intoour space and we're inviting different.
But it's so we're changingthe narrative. We're changing
the power dynamic becausetoo often we're invited
into other spaces wherewe don't really have much of
a say or control of whathappens when we go to places.
So we wanted to beable to create this safe
space for us and thenhave others so that we can.
Have these discussions about how to includeus, those of us with rare conditions,
those of us from diverse backgrounds,those of us who are underserved.
Because of economic differences,those who are of us who are
excluding, that's whatessentially the conference is about.
As you've heard fromSondra's, idea is not only very
much grounded in reality,but also the data that Sondra
and her colleague uncoveredand resulting study at the
heart of Aderra is the ideaof equality and diversity.
Each person's experience withrare disease is unique and their
individual and community needsmust now and going forward.
To be addressed, ourcommunities deserve a space
where people fromdifferent backgrounds, faiths
and perspectives cometogether to share their
knowledge gained throughtheir lived experiences.
So what is inclusion or exclusionand how are patients impacted?
Very often I get a little bit frustratedby that. I think people feel that
when I'm talking about exclusion orinclusion, I'm just talking about race.
Obviously that is part ofit, but there's so many other
people and it's not alwaysjust about race, but there's.
So many other. People who are excluded they,for example, may be invited to take part.
In a study which is in another city veryoften in the major cities, just get in. There
is a major thing, just a cost. OK, maybe getreimbursement, but that's after the moon.
Has been spent in the1st place, so there's there's
lots of different reasonswhy people are excluded.
Now I'd like to introduceSam Fillingham, founder of
Polland Syndrome Support Network UK. Sam's experience
with Polland syndrome, a rare indifference condition,
started when her sonwas born 14 years ago.
Sam quickly saw that isolationthat parents and children affected
by the condition can often feelwhen receiving the diagnosis.
And continuing forwardto find a treatment plan.
Since her son's birth,Sam has worked tirelessly
with the global pollensyndrome community
to help bring their voices to the forefrontof conversations around social inclusion.
With a limb difference, bodyconfidence well-being, as well as
touching on mental health withinthe community of parents and patients.
It was really interestingwhen some just first
started, started talkingabout adara and thinking about
inclusion, and naively Ididn't really think that we were
being like excluded onthe surface of it. I knew that.
We didn't haveequity in our care.
Yeah, but that concept of our communityas underserved and excluded wasn't
really at the forefront of my minduntil I started talking to Sondra about it.
And then it was really just becamepivotal in my mind then of of course being
excluded, like the people that Sondrahas invited into these communities.
The researchers, thefarmer, the industry, those
are people that we can'tget a foot in the door with
that we can't get to theplace at the table with
people like that to improvethings for Poland syndrome.
And it was just really excitingto hear about a new way of doing
things where we can be includedand we can start opening the door.
To communities like ourswith Poland syndrome.
As I've heard from Sam, it wasn'timmediately obvious that her community
could be considered a communitythat was excluded or underserved.
Together, Sondra and her colleagueswith Sam and her hard earned parent
of a patient and communityorganising expertise, set out to bring
together all stakeholders to talkabout the challenges facing new disease
patients and how to find solutionsthat would improve their lives.
Bringing together thosedifferent experts and
regarding ourselvesas experts in that space
as well is so newcompared to other work that
we've done before thatso to put ourselves on.
On a bit.
Of a parapet of like look we.Are the experts you do need to.
Come to us now.
To find out about thesediseases and you're the experts in
your field. And please cometo us and start listening to us.
We are the experts in our ownconditions many times as patients or
parents, we've been disregardedand our own lived experiences have not
begun in the time and attentionneeded to help uncover the ways in
which we can work together withclinicians and with other stakeholders.
More collaboratively.
The idea is we have thediverse in that, so we have
some with the rareconditions and with the carrier.
From a rare disease familyand a parent of someone with
a rare condition. So weare a community of practise.
Just the three of us andthose of our network, if
you have a question, forexample around what does
inclusion look like for us,we may have a very different
response to that questionthan the farmer industry.
Or to someone in inacademia, what does inclusive
research or research practisemean to them? It's ethic.
It's how to engage. It's aboutCo creation, it's about funding. It's
a very different sorts of responses,but at some point there where
there be differences, there willbe similarities and that's where we
want this communities of practisemodel to work at the conference.
So thus far in our journey,knowing what we know, what
type of space, what type ofconference will EDIRA be?
We wanted to make itreally inclusive. We're
considering people withvisual impairment and yes, we
wanted people who, forwhatever reason there might
be mobility reasonsthey can't come in. Period.
That that we didn't.
Want them to feel as though, oh, I'll go.To the poor.
Relation. I'll go to the online one.Will be as good.
Yeah, it will be greatbecause we're just repeating
the same thing, but it willbe a different audience.
The discussions andwhat comes out of it may be
different, but we stillwant a very rich event.
During the conference, Sam Fillinghamwill be leading an in conversation
piece with Elizabeth Davenport,Elizabeth or Beth to the Raquil community.
Network is a rare disease advocate and complexcommunity case worker with over 14 years
of experience oftenworking in underserved
and disadvantaged localcommunities in the UK.
She is the lead consultantfor rare Community network
at RareQol and Advocate forNPUK and kinship support
Officer at the kinship
Charity. In these days of hybrid inperson and other forms of presence in
conferences, Sondra explains themethodology behind the conference format.
Conversation around whether to haveit as a hybrid or whether to have it as
two separate events, and because ofthe nature of what we're trying to achieve.
Because there's a lot goinginto this conference, it's going
to be a really comprehensiveconference. It felt it would be
too much to have as a hybridattending as a virtual attendee
at a conference. And you feelas though you're on the outside.
Looking into a goldfish bowl andyou're not really engaged, so we wanted it
to be those who were in person engagedand those were more online engaged.
The conference is sponsored by a few UK basedcompanies who will be bringing their own
unique skills and teamsto make the experience
as inclusive andinformative as possible.
There will also be 2 audio content piecesthat will be hosted by yours truly, and
Sondra Butterworth, including two specialguests that have yet to be announced.
So please do keep your eyeson social media and these will
be added value content aspart of the robust content offered.
At the EDIRA conference, in additionto these various types of content
seminars, meetups, and other opportunitiesfor our communities to come together.
And also engage withstakeholders. There will be
seminars and activitiesplanned between the end
of the EDIRA 2023conference and the results in
study presented at theEDIRA 2024 conference.
That the online eventand the in person event are
going to be replicas ofeach other. You won't.
There will be.
The interviewing conversation with wecan have a panel of experts or in the in
the inclusive space talking about inclusion,but from different perspectives, and
then they're going to have the community ofpractise workshop itself, where different
people from different communities,we're all gonna be talking about inclusion.
We're gonna have graphicalmetaphors for people to use and.
Take after the conference. Once theconference is over, it's not the end because
we want to carry on and have 4 seminarsand the online conference finished.
The platform will be open toall attendees to be able to attend
different activities and to continuethe communities of practise.
As we move closer to understandingEDIRA and taking this journey.
Together we have an ever expandingcast of characters such as Doctor
Natasha Radcliffe of Couchhealth, Doctor Emiline from Cardiff
University and the Michael J. FoxFoundation and associate professor
Doctor Andrew Mitchell, as wellas other speakers to be announced.
Part of what we're doing is we'regonna be getting all the the dialogue and
the information and writing everythingup as a paper from the conference.
And that's a reallyimportant aspect. We can't
announce the keynotespeaker. Yeah, those are
the main things thatwe're going to be doing.
We will be feeding backsome of the research.
It's been.
Happening. So we'vegot, for example, the
projects that we're doingin work while is working
with Doctor Emma Lanefrom Cardiff University and
it's with a project that'sfunded by Michael J.
Fox Bond Foundation intoParkinson's and that's about inclusion.
Emma is gonna be speakingabout some of the work around that.
Then we've gotone of our sponsors.
From coach health. Doctor NatashaBuckley. And she's been doing some.
Work on couch.Health have been doing some work around.
And inclusion andworking closely with farmer
companies, particularlyin America, working
with different diverse communities andgetting them involved in clinical research.
We've got associate Professor AndrewMitchell. He will be talking about some of
the work around frontiers for psychology.So that is a publication and we've had.
A call out.For inclusive.
So hopefully we can share some ofthe information from those as well, so.
There's a lot.
The value that the conference brings toour UK and global revises community is not
only in the initial idea conference, but itsframework, its continued use of an online.
Platform to continue toengage participants between
events and seminars, andthe final study which will be put
together by our communitieswith Doctor Sondra Butterworth
and her colleagues to bepresented at the 2024 conference.
We want to be able tocreate more work after
the conference to beable to create a resources.
In addition to Edera, there willbe more work done collaboratively
with Rorqual and PolandSyndrome Support Network UK.
We recently announced.
our Sondra partnership with PIP-UKand RareQol, which is super exciting.
So we've been part of the RareQolnetwork for a while now, and Sondra and
her wonderful team have beenhelping me and Pipe UK for well over 12
months now, including with someinterns from Chester University last year.
And many other pieces of.That that they've supported me with so.
It's really wonderfulthat we've been.
Able to formalise our partnershipthis year moving forward.
So we've sat down andhad a look at where we have
commonality across allour pieces of work and
what we can do to helpeach other. So I'm working
on a medical symposium for Polland syndrome.
Where I want to bringtogether surgeons and experts
in Poland syndrome tolook at early treatment plans
because we've got alot of issues there in our
Community and Sondra isgoing to be part of that panel.
As these discussions, activitiesand collaborations take shape, we
can be assured that more opportunitiesare coming to our Community.
What is currently in the works has thepotential to be a transformative experience
for those who choose to travel this roadto equality and diversity and research in
in other areas where we have traditionallybeen excluded or underserved as a wider,
diverse and intersectional community. Atthis time, free tickets are being offered.
When the supply folks you are interestedcan cheque out the virtual Eventbrite
page, which I'll include in the show noteswith other resources for this episode.
And the journey to Madeira began withthis simple question. Why aren't patients
and people affected by rare conditionsbeing included in the discussions
and research ideas started as a questionturned into a series of discussions
and is becoming a patient centred shiftin the power dynamic between patients.
Industry stakeholders,EDIRA is our space to
create our opportunitiesfor those who wish to work
collaboratively and whereeach experience with rare
disease is unique. As uniqueas these diverse communities.
Sam Feldman has shared howPipek have benefited from the
work being done with RareQolnetwork and now with EDIRA.
Together, Sondra andher colleagues Sam and the
other experts we mentionedhere today will set out to
create the change thatwe need and find solutions
to improve our experiences.As Sam so aptly said.
We are the expertsin our own conditions.
(00:20):
Adoura is a step towards including patientsas experts in their own conditions,
and it is a step towards a brighterand more inclusive and diverse future.
Thanks for listening to this week'sepisode of Signalise, a Dazzle for our
podcast. To stay up to date on thepodcast and Dazzle Ferrere follow us on
Facebook, Instagram, and Twitter at DA Z Z L E, the number 4 RARE, R A R E.
And finally, if you liked this episode,share it with a friend and tag us.
On social media platforms.
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