RARE Resources
The following downloads have been created by our RARE Revolutionaries Community as a collaborative body of work, harnessing the collective voices of our diverse community of patients, advocates and charities to share their joint voice on the issues that matter to them. All files can be downloaded straight to your device for printing, and for ease of sharing via email or across your social media channels. We ask you to please READ, LEARN, SAVE, PRINT and SHARE and help us turn to the tide for those living with rare disease.
READ, LEARN, SAVE, PRINT & SHARE
10 Top Tips for RARE parents
10 Top Tips for RARE parents
Being a parent sets your life on a whole new trajectory, the experience of raising little people is a whirlwind journey full of surprises and lessons. Being a parent with a rare disease or condition can sometimes make parenthood unpredictable and challenging. David Ross and Adam Johnson are both RARE Dads. They share their advice for parenting whilst managing your own health and making sure you make the most of your little ones growing up.
Click to view now
READ, LEARN, SAVE, PRINT & SHARE
10 Top Tips for RARE parents of RARE children
10 Top Tips for RARE parents of RARE children
Becoming a parent is one of the biggest moments in your life and yet nothing can prepare you for the twists and turns of parenthood, especially the event of a rare disease diagnosis for your child. Rebecca Pender understands first hand how to navigate the journey as a parent of a child with a rare condition, here she shares her advice and wealth of wisdom as someone who has been through the ups and downs of rare parenting.
Click to view now
READ, LEARN, SAVE, PRINT & SHARE
Top 10 Tips for RARE Healthcare Providers
Top 10 Tips for RARE Healthcare Providers
Attending countless hospital and medical appointments can be exhausting, demoralising, fraught with anxiety and at times tedious for families living with rare disease. Whether it is a first appointment or part of a long-standing patient - clinical relationship, here are the Top 10 Tips according to our community, to help make the process that little bit easier.
Click to view now
READ, LEARN, SAVE, PRINT & SHARE
Bereavement Advice - Navigating RARE Grief
Bereavement Advice - Navigating RARE Grief
We reached out to our RARE community to ask families who have suffered the loss of a family member, to complete a short survey. We have compiled their responses to create two downloadable resources. Navigating RARE grief - offers guidance on how to best support grieving families and how to start a conversation about bereavement.
Click to view now
READ, LEARN, SAVE, PRINT & SHARE
Bereavement Advice - Living with RARE Grief
Bereavement Advice - Living with RARE Grief
Insights from our RARE Revolutionaries community about how to find a new normal and strategies for living with RARE grief, based on our community survey with advice for those currently on their own personal journey with grief.
Click to view now
READ, LEARN, SAVE, PRINT & SHARE
10 Top Tips for RARE Employees
10 Top Tips for RARE Employees
Landing your dream job when living with a rare disease, or with care-giver responsibilities can be daunting and arduous. Our RARE Revolutionaries community have a wealth of experience to share on this matter, and here are their top tips for getting and keeping that dream role.
Click to view now
READ, LEARN, SAVE, PRINT & SHARE
10 Top Tips for RARE Employers
10 Top Tips for RARE Employers
Creating an inclusive workplace and company wide culture is more than just writing a mission statement of buzz words. Together with HR consultants, Dakota Blue Consulting, here are our top tips for being an inclusive employer fit for our talent rich RARE community.
Click to view nowRARE REV-inars
The following web-inars are created in partnership with 3rd party rare-disease stakeholders as a multi-stakeholder look at topics and disease areas which interest the rare disease community
RARE REV-inar episode 013
Rare Caregivers Report: Experiences supporting loved ones living with rare diseases
RARE REV-inar episode 012
Shining a spotlight on neurological features of inherited metabolic disorders
RARE REV-inar episode 011
Women in RARE: a celebration of women in RARE science and research
RARE REV-inar episode 010
Burned out and Breaking?
RARE REV-inar episode 009
Understanding cold agglutinin disease from a multi-stakeholder lens
RARE REV-inar episode 008
The power of the patient voice in shaping policy and advancing research
RARE REV-inar episode 007
Mobile research nursing: revolutionising recruitment and retention in clinical trials
RARE REV-inar episode 006
Gene therapy: a new age of care in rare diseases?
RARE REV-inar episode 005
Understanding aTTP from a multi-stakeholder lens
RARE REV-inar episode 004
Evolving treatments for Gaucher disease: Understanding gene therapy
RARE REV-inar episode 003
Rare Patient Voice: The Rare Voice: Patients, Family Caregivers, and Research
RARE REV-inar episode 002
ANCA-associated vasculitis and it's impact on patients and families
