Community Networks for Children and Families with Rare Diseases and Chronic Conditions - PowerPoint PPT Presentation

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Community Networks for Children and Families with Rare Diseases and Chronic Conditions


Community Networks for Children and Families with Rare Diseases and Chronic Conditions ... Emerging Rare Disease Network. Workshop Representatives of 10 ... – PowerPoint PPT presentation

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Title: Community Networks for Children and Families with Rare Diseases and Chronic Conditions

Community Networks for Children and Families with
Rare Diseases and Chronic Conditions
  • Bill McKellin, PhD
  • Emilie Gladstone
  • Dept. of Anthropology
  • Milan Patel, MD
  • Rosemarie Rupps, MSc
  • Dept. of Medical Genetics
  • UBC

The Objectives
  • Identify resources available to families of
    children who have rare diseases and chronic
  • Develop local, collaborative, multidisciplinary
    networks of
  • Parents
  • Support groups
  • Health and social service professionals
  • Expertise across existing disease-specific
    organizational boundaries.

  • Differentiation among
  • Disease pathophysiology
  • Illness personal phenomenological experience
  • Sickness social ecology
  • Illness experience and sickness are shaped by
  • Service providers' patterns of practice
  • Health care
  • Education
  • Social services etc.
  • Child and family encounters with services
  • Patterns of practice reflect local social

Rare and Chronic Conditions
  • Rare or "orphan" disease is one that affects
    fewer than 1 in 2,000
  • There are more than 7,000 rare disorders
  • Chronic conditions affect approximately 3 million
  • 1 in 10 Canadians
  • An estimated total of 30.3 of Canadian children
    aged 6 to 11 had one or more chronic physical
    health conditions/impairments

Rare to Ultra- rare
  • Cystic fibrosis
  • 1/2500
  • Muscular dystrophy
  • 1 in 6,000
  • Achondroplasia
  • 1 in 26,000
  • Fibrodysplasia ossificans progressive
  • 1 in 2 million
  • N1 Name?

OverviewOrganizations for Rare Diseases
  • Disease Specific
  • Generic Rare Diseases
  • Generic Support

Disease Specific Organizations
  • Organizations defined by disease or a medical
  • Canadian Cystic Fibrosis Foundation
  • Muscular Dystrophy Canada
  • Mucopolysacharidosis Society of Canada
  • Roles
  • Research
  • Support
  • Advocacy

Organization of National, Provincial, and Local
  • National and Provincial
  • Canadian Cystic Fibrosis Foundation
  • Muscular Dystrophy Canada
  • Mucopolysaccharidosis  Society of Canada
  • Foundation for Prader Willi Research Canada
  • International
  • 5P- Society - Cri du Chat Syndrome

SupportDisease Specific Information
  • Knowing what to expect is really important.
    Talking to people on the internet really helped
    us to know what it was like., even if our
    daughters experience was different..
  • Father of a child with Fibrodysplasia ossificans

  • Fill in gaps in the health care system
  • comprehensive care
  • Mental health and emotional support
  • parent to parent
  • organization to parent
  • Navigating Systems and referrals
  • The most important in my mind is the
    networking and knowing what is available.

  • When do families need support?
  • Transition times
  • Medical, social, educational, age
  • Transition out of high school is very big
    because thats when everything ends. The
    government recognizes that as a big important
    milestone but for the individual, their support
    needs may not have changed very much at all. Its
    a very artificial barrier that is created for
  • Sometimes families are reluctant to be involved
    with service organizations when they are not in
    times of crisis or transition.

  • Few organizations actually perform research but
    many give money to research projects
  • Organizations often provide access to potential
    research participants for researchers
  • Would like to be more involved in research and
    have assistance from researchers

Research as Social Support
  • Some organizations felt that involvement in
    research was often a positive experience for
  • For families who manage rare and chronic
    conditions, research becomes individual care
  • Members find participation very valuable. They
    are doing something. They are also learning
  • How do researchers conceptualize the individuals
    health care needs in a research setting?

  • Awareness and education of community and medical
  • The number one problem is knowledge. Not only in
    the public, but in the professional realm there
    is a lack of information and misinformation.
  • Correcting misconceptions

  • Fundraising is one of the most time consuming and
    least enjoyable parts of running an organization!
  • All organizations identified funding as a barrier
    to providing services
  • Many organizations had particular boards or
    committees to manage fundraising
  • Issues of funding are linked to issues of

Local Variation
  • The Social Ecology of Disease-specific
    Organizational Support
  • Every district varies toothats another problem
    when you are provincial and you are trying to
    serve the different districts-- especially
    education. There are different paths in every

Relationships Among Organizations
  • Little coordination, communication or
    collaboration among disease-specific groups
  • Non-profit sector as competitive because of donor
  • We would be swallowed up by bigger fish.The
    bottom line is that we need to stay alive in
    order to ensure the entire message is given out
    to people
  • Others frequently wish to collaborate but have
    not yet done so because of logistical and time

Organizations as Cultural Groups
  • Groups maintain distinct cultural identities for
    children and families
  • Organizations must be seen as unique to maintain
    their cultural groups identities and to draw the
    attention of funders
  • Segmentary opposition maintains boundaries
    between groups
  • Limited interaction between cultural groups helps
    to explain the lack of collaboration between

Generic Rare Disease Organizations
  • International - 25 organizations
  • Canada - 3
  • CORD
  • Canadian Gene Cure Foundation
  • Rare Disease Foundation
  • United States - 14
  • European Union (including the UK) - 8

Relationships among organizations
Generic Rare Disease Organizations
  • 25 Organizations
  • Activities
  • 22 are engaged in family and peer support
  • 12 undertake advocacy
  • 13 support or conduct research
  • 13 were founded by patients and/or family
    members, 5 by researchers

Generic Rare Disease Organizations
  • CORD
  • Orphan drug policy
  • Rare Disease Foundation
  • Research
  • Generalizable tools for genetic research
  • Micro-grants for low incident small scale
  • Support
  • For n1 diseases
  • Address local generic needs defined by the family
    interaction with health, educational, and social

Generic Support Organizations
  • Services based on functional needs of recipients
    not diagnosis
  • Mobility
  • Visual impairment
  • Developmental delay
  • Services to caregivers
  • Respite
  • Social support
  • Training
  • Advocacy
  • Family Support Institute
  • Western Society for Children

Children's and Parents' Experience
  • Uncertainty of disease
  • Multiple clinical encounters
  • Multiple Special education encounters
  • Social services involvement
  • Financial demands

Parents Experience
(No Transcript)
N1 Community of Many
  • Until I met other parents, I didnt realize how
    similar our issues were.
  • Father who has a child with a unique condition

Care across stove pipes
  • Every child and their family comprises an N1

Shared Issues
  • Disease
  • Access to pharmaceuticals / treatments
  • Care coordination
  • Information sharing among physicians
  • Lack of needs-based assessment

Shared Issues
  • Personal
  • Social support from others with similar diagnosis
  • Respite for care givers
  • Financial advice
  • Difficulty attending disease specific
    organization events

Shared Issues
  • Social Ecology
  • Health care
  • Timely access to health records
  • Coordinated scheduling
  • Transition
  • Schools
  • IDP provincial mandate - local implementation
  • Advocacy
  • Transition
  • Social services
  • Transition

Generic Support Organizations
  • Functional need of child
  • Locally based
  • Services fill the gaps in institutional /
    systemic care
  • Link among disease specific groups whose children
    have needs for similar services

Emerging Rare Disease Network
  • Workshop Representatives of 10 organizations
  • Disease specific organizations
  • Generic service providers
  • Generic rare disease organization

Rare Disease Network
  • Disease specific groups
  • Share generalizable resources developed for
    specific groups
  • Dont re-invent the wheel collaborate in new
  • Generic support services
  • Extend services geographically
  • Extend services generically
  • Advocacy
  • Building communities
  • Virtual
  • Face to face

Network Contributions
  • Parents support
  • Family Support Institute - Online registry (Nov.)
  • Local social networking across diseases RDF
    Ning site
  • Health services
  • Information sheet for emergencies
  • MPS Society Binder for regular visits
  • Advocacy
  • Schools
  • On-line advocacy video training
  • CF - Parent mentors for school districts
  • Social services
  • Collaborate on transition programs

Needs based local services
  • Many personal and social needs of children and
    their families are not disease-specific
  • Local social ecology shapes patterns of practice
  • the interaction among children, parents, and
  • Disease-specific and generic rare disease
    organizations can collaborate to serve the local
    personal and social needs of children and their

Thanks to
  • The organizations an families who participated
    in this study
  • University of British Columbia
  • BC Childrens Hospital
  • Rare Disease Foundation
  • Child and Youth Health Research Network
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