Connecting with Others
Connecting with others is especially important for carers of people with rare diseases due to the unique challenges we face. Here are some of the benefits of reaching out:
- Helping carers feel less isolated. Rare disease carers often feel alone because people do not understand their situation. Connecting with others who “get it” can provide emotional relief and validation.
- Sharing Knowledge and Resources. Rare diseases are difficult to diagnose, often lack clear treatment paths or widely available information. Connecting with other carers is helpful to share practical tips, specialist contacts, and coping strategies that only comes from living through experiences.
- Emotional Support and Mental Health. Caring for someone with a rare disease can be emotionally intense and unpredictable. Trusted peer support groups can offer a safe space to express fears, frustrations, and hopes that many carers feel they cannot discuss within their own family.
- Advocacy and Empowerment. Carers who are connected with other carers often become powerful advocates for awareness, research, and policy change. We are ‘STRONGER TOGETHER’; as collective voices we are more likely to influence health and social care policy and practice.
- Access to Global Communities. Online platforms allow carers to connect across borders, which is especially valuable for families with ultra-rare conditions. Global networks can help you find others with similar conditions or needs, providing hope, solidarity and sometimes lifesaving insights.
Sandra Campbell - Connecting with others
Olinda SantinConnecting with others
Kerry LongmoreConnecting with Others
Lynne LohfeldConnecting with others
Gillian CassidyConnecting with others
Resources
NIRDP
RAiN
https://www.rainrareresearch.org/
Unique
QUB Rare Disease Focus
https://www.qub.ac.uk/sites/RareDisease/
RD-Connect
Rare Disease Research Network
https://www.camraredisease.org/rare-disease-research-network/
RARE Concierge
https://globalgenes.org/rare-disease-patient-services/
Patient Worthy
https://patientworthy.com/2017/07/11/platform-bringing-together-rare-disease-patients/
Rare Disease Day
https://www.rarediseaseday.org/
The Mighty
Rareguru
Rare Minds
Rare Diseases
Visual and Hearing impairment connections
Be My Eyes
TapTapSee
999 BSL
Seeing AI - Talking Camera for the Blind
HSC Carer Support contacts
Carers’ Services Belfast Health & Social Care Trust
Website
https://belfasttrust.hscni.net/service/carers-services/
CarerSuppSvcs@belfasttrust.hscni.net
Telephone
Northern Health & Social Care Trust
Website
https://www.northerntrust.hscni.net/services/carerhub/
carer.hub@northerntrust.hscni.net
Telephone
Southern Health & Social Care Trust
Website
carers.coordinator@southerntrust.hscni.net
Telephone
South Eastern Health & Social Care Trust
Website
https://setrust.hscni.net/service/carers-support-service/
carer.support@setrust.hscni.net
Telephone
Western Health & Social Care Trust
Website
https://westerntrust.hscni.net/service/carers-support-service/
carers.support1@westerntrust.hscni.net
Telephone
Carers' Support and Voluntary Organisations
Carers NI
Provides information and support for carers on a range of issues.
Website
Telephone
Address
3rd Floor,
Merrion Business Centre,
58 Howard Street,
Belfast,
BT1 6PJ
Crossroads Care NI
Promotes, offers, supports and delivers high-quality services for carers and people with care needs.
Website
https://www.crossroadscare.co.uk/
Telephone
Address
432 Upper Newtownards Road,
Belfast,
BT4 3GY
YOUNG CARERS SUPPORT
National charity supporting vulnerable children and young people in Northern Ireland.
Website
ask.us@actionforchildren.org.uk
Telephone
Address
10 Heron Road,
Belfast,
BT3 9LE
Action for Children NI – Regional Young Adult Carers (Aged 18–25)
Support across all 5 Trust areas for young adult carers aged 18–25.
https://www.facebook.com/actionforchildrenni/
YoungAdultCarersNI@actionforchildren.org.uk
Telephone
Action for Children NI – Regional Young Carers (Aged 8–18)
Supports young carers aged 8–18 in Belfast, South Eastern, and Southern Trust areas.
Website
https://www.facebook.com/YoungCarersNI/
NIYoungCarers@ActionForChildren.org.uk
Telephone
Barnardo’s (Northern Ireland Office)
Offers support and advice for young people, families, and young carers.
Website
https://www.barnardos.org.uk/who-we-are/where-we-work/northern-ireland
Telephone
Address
542–544 Upper Newtownards Road,
Belfast,
BT4 3HE
Older People
Provides companionship, advice and support for older people who need it most.
Website
Advice Line
Telephone
Address
3 Lower Crescent,
Belfast,
BT7 1HP
People With Physical Disabilities
Cedar Foundation
Offers information, training and advice on independent living. Provides support for children and young people with Cerebral Palsy and related disabilities, and their parents.
Website
https://www.cedar-foundation.org/
communications@cedar-foundation.org
Telephone
Address
Malcolm Sinclair House,
31 Ulsterville Avenue,
Belfast,
BT9 7AS
Headway Belfast
Dedicated to supporting people with a brain injury, their families and their carers.
Website
Telephone
Address
Headway c/o RABIU,
Musgrave Park Hospital,
Stockman’s Lane,
Belfast,
BT9 7JB
Spina Bifida and Hydrocephalus (Shine)
Provides support, advice, information and advocacy to children and adults with Spina Bifida and Hydrocephalus.
Website
https://www.shinecharity.org.uk/northern-ireland-region/northern-ireland-region
firstcontact@shinecharity.org.uk
Telephone
Address
Shine,
PO Box 61,
Cookstown,
BT80 1AN
Mental Health Support
Action Mental Health
Provides rehabilitation, training and personal development programmes for people recovering from mental illness.
Website
Telephone
Address
Action Mental Health Central Office,
27 Jubilee Road,
Newtownards,
BT23 4YH
C.A.U.S.E. for Mental Health
Offers advice, support, training and information for carers of people with severe mental ill health.
Website
Helpline
Telephone
Address
Building 2,
Lesley Office Park,
393 Holywood Road,
Belfast,
BT4 2LS
Tide – Together in Dementia Everyday
Supports carers of people living with dementia.
Website
Telephone
Address
3 Lower Crescent,
Belfast,
BT7 1NR
People With Learning Disabilties
Autism NI
Provides support for people with autism, their families, and carers.
Website
Telephone / Helpline
028 9040 1729 (Option 1 — Monday to Friday, 9am–5pm)
Address
Donard,
Knockbracken Healthcare Park,
Saintfield Road,
Belfast,
BT8 8BH
Bryson Care
Offers advocacy and information services for people with learning disabilities.
Website
Telephone
Address
2 Rivers Edge,
13–15 Ravenhill Road,
Belfast,
BT6 8DN
Caring Breaks
Provides short breaks for family carers and social/recreational activities for adults with a learning disability.
Website
Telephone
Address
6c Wildflower Way,
Apollo Road,
Boucher Road,
Belfast,
BT12 6TA
Mencap
Provides information, advice and support for children and adults with a learning disability and their families.
Website
Helpline
0808 808 1111 (Monday to Friday, 9am–5pm)
Telephone
Address
Address: Mencap Centre,
5 School Road,
Newtownbreda,
Belfast,
BT8 6BT
Parent Action
Offers independent family advocacy services for parent carers of children and adults with disabilities.
Website
https://www.communityni.org/help
Telephone
People With Visual and Hearing Impairments
Action on Hearing Loss
Offers information, employment support, communication tools, and training for people with hearing loss.
Website
information.nireland@hearingloss.org.uk
Telephone
Textphone
Address
Harvester House,
4–8 Adelaide Street,
Belfast,
BT2 8GA
Royal National Institute of the Blind (RNIB)
Provides advice, advocacy, employment and training support, and braille/audio services for people who are blind or visually impaired.
Website
Telephone
Victoria House,
15–17 Gloucester Street,
Belfast,
BT1 4LS
Sense
National organisation supporting people who are deafblind. Offers residential, daycare, and education services.
Website
Telephone / Textphone
Address
The Manor House,
51 Mallusk Road,
Mallusk,
BT36 4RU
Additional Support Services
Action Cancer
Provides counselling and support services for cancer patients, their families, and carers.
Website
Telephone
Address
Action Cancer House,
20 Windsor Avenue,
Belfast,
BT9 6EE
Alcoholics Anonymous
Offers support and advice for people with alcohol issues.
Website
https://www.alcoholics-anonymous.org.uk/
Telephone
Address
Unit 11,
North City Business Centre,
2 Duncairn Gardens,
Belfast,
BT15 2GG
Centre for Independent Living – Belfast
Offers information, training, advice, and support around independent living and Direct Payments.
Telephone
Textphone
Address
Linden House,
Beechill Business Park,
96 Beechill Road,
Belfast,
BT8 7QN
Disability Action
Provides services to individuals with physical, learning, sensory, hidden, and mental health disabilities.
Website
https://www.disabilityaction.org/
Telephone
Textphone
Address
Portside Business Park,
189 Airport Road West,
Belfast,
BT3 9ED
Macmillan Cancer Relief
Offers healthcare, practical and emotional support for people diagnosed with cancer and their carers.
Website
cancer.info@belfasttrust.hscni.net
Telephone
Address
Macmillan Support & Information Centre,
77–81 Lisburn Road,
Belfast,
BT9 7AB
Marie Curie
Provides support and information for individuals diagnosed with terminal illness.
Website
https://www.mariecurie.org.uk/services/hospices/belfast
belfast.hospice@mariecurie.org.uk
Telephone
Address
Marie Curie Hospice,
Kensington Road,
Belfast,
BT5 6NF
Narcotics Anonymous
Provides support and advice for people struggling with drug use.
Website
https://na-northernireland.org/
Telephone
Northern Ireland Hospice Care
Provides specialist palliative care for adults and children, along with bereavement support.
Telephone
Address
Adults Hospice,
74 Somerton Road,
Belfast,
BT15 3LH
Northern Ireland Children’s Hospice
Offers respite, symptom management, and end-of-life palliative care to children and young people.
Telephone
Address
Horizon House,
18 O’Neill Road,
Newtownabbey,
BT36 6WB
PHAB (NI)
Promotes integration and equality of opportunity for people with and without disabilities.
Website
Telephone
Address
3 Jennymount Business Park,
North Derby Street,
Belfast,
BT15 3HN
Praxis Care
Provides support for individuals with mental ill health, learning disabilities, autism, and dementia.
Website
Telephone
Address
25–31 Lisburn Road,
Belfast,
BT9 7AA
Turn2us
A national charity that provides financial support and resources for people in financial hardship.
Website
Telephone
Samaritans
Offers 24/7 confidential emotional support for people experiencing distress or suicidal thoughts.
Website
Telephone
Address
5 Wellesley Avenue,
Belfast,
BT9 6DG
Share Your Rare Story
Every caregiving journey is unique and your story matters. Whether you’re a family member, friend, or professional supporting someone with a rare disease, we invite you to share your experiences. Your story could offer comfort, insight, or hope to others walking a similar path.
Submit Your Story
