Transcript The aHUS Alliance @aHUSallianceAct

21 June 2016
WEBINAR
Hosted by RareConnect
In Collaboration with the aHUS Alliance
2016 aHUS Global Poll
Featuring Analysis & Commentary
by
Dr. Christoph Licht
aHUS Alliance
Presenter: Linda Burke (USA), volunteer with The Atypical HUS Foundation
aHUS Alliance
www.aHUSallianceAction.org
aHUS Alliance
www.aHUSallianceAction.org
The aHUS Alliance, an affiliation of aHUS patient groups
around the world, includes among their goals:
 supporting aHUS patient groups worldwide,
 assisting national & global initiatives regarding information
about medical and patient issues,
 providing and promoting the Patient Voice, and
 improving interactions among all stakeholders involved
with aHUS treatment and research.
“GOOD WILL COME TOGETHER”
aHUS Alliance
www.aHUSallianceAction.org
aHUS knows no borders.
Common issues and concerns affect patients of all nations, ages, and cultures.
aHUS Alliance - created in Feb 2013 in Barcelona. Advocates from aHUS patient
organizations represented Belgium, France, Italy, Russia, Spain and the UK.
aHUS Alliance – Engagement
• Outreach: Rare Disease Day
• Creation of aHUS Awareness Day, the annual 24 Sept Campaign (initiated 2015)
• Professional Conferences & aHUS Alliance Meetings
• Development of aHUS ASSETS & RESOURCES
New Website launched May 2016– www.aHUSallianceAction.org
CONNECT
aHUS Alliance
INFORM
COLLABORATE
www.aHUSallianceAction.org
aHUS – an ‘Ultra Rare’ Disease
2016 aHUS Global Poll – OVERVIEW
Adult aHUS Patient & Pedi Caregiver responses provided better understanding:
• INSIGHTS into aHUS diagnosis, treatment, and medical care
• Patient Voice – Identify NEEDS & ISSUES
Data collected from 233 respondents from 23 countries. Poll offered in 6
languages: ENG, ES, FR, RUS, IT and JPN.
Launched on Rare Disease Day, 29 February 2016 and open through 15 April.
2014 aHUS RareConnect Poll - similar effort, 214 respondents from 17 nations.
2014 RareConnect Webinar & Assets: http://ow.ly/4n9k00
aHUS Alliance
www.aHUSallianceAction.org
@aHUSallianceAct
The aHUS Alliance
aHUS Patient Voice – an Overview of Poll Participants
Respondent Type:
aHUS Adult patients - 52%
Pediatric Caregivers - 48%
Patient Gender:
66% Female
34% Male
Most Common Age at Initial Onset (N=229) :
Genetic Testing:
29% - 21 to 35 years old
20% < 3 years old
84% have or are awaiting Genetic Test Results
National Response Rates (N=233):
USA - 43%
UK - 18%
Canada - 11%
Other 20 Nations - participation rate of less than 10% of survey responses
aHUS Info Sources:
Check aHUS Patient Organizations– 37%
aHUS Alliance
When seeking Information, MOST
Rely on their Doctor – 17%
Utilize Search Engines – 26%
www.aHUSallianceAction.org
aHUS Alliance
www.aHUSallianceAction.org
aHUS Alliance
www.aHUSallianceAction.org
aHUS Alliance
MISSION STATEMENT
The aHUS Alliance, through the collaboration of its affiliates,
will promote global awareness of aHUS,
will work with international aHUS researchers and,
by supporting newly emerging national aHUS patient groups,
will bring relief and support to those affected by aHUS to save ,
and improve the quality of, more lives.
“GOOD WILL COME TOGETHER”
aHUS Alliance
www.aHUSallianceAction.org
aHUS Alliance PROJECT
INFORMATION
aHUS Alliance
SUPPORT
RESOURCES
www.aHUSallianceAction.org
NEWS
BLOG
INFO CENTER
PROJECTS
www.aHUSallianceAction.org
INFORMATION
Fact Sheets, Graphics, Clinical Videos
PROJECTS
aHUS Awareness Day
Rare Disease Day
Country-Specific Projects
NEWS
Research, Journal Articles
Drug R & D, Clinical Trial Data
Conferences, Advancements
BLOG
Delving Deeper: Connections & Insights
Under Consideration:
Guest Columnists
Multiple Languages
CONNECT
aHUS Alliance
INFORM
COLLABORATE
www.aHUSallianceAction.org
DIALYSIS
2/3 of aHUS patients needed dialysis during or after initial onset, with only 32%
reporting that no dialysis was needed. (N=233)
46% of poll respondents stated the most SIGNIFICANT DIALYSIS ISSUES was it interferes with
normal routines. Other dialysis issues (Question 18)
•
Impact on Other ORGANS 29%
•
Negative affect on QUALITY at Work/School 28%
•
Issues with ANXIETY or DEPRESSION 27%
aHUS RESEARCH
PARTICIPATION in aHUS Research: 50% of Respondents have already done so, and 36%
more would like to: (Question 29)
YES – 30%
YES, and would AGAIN- 20%
NO, But WOULD LIKE TO Know How – 36%
Highest months for initial aHUS onset? Oct through Dec.
aHUS Alliance
www.aHUSallianceAction.org
FURTHER EXPLORATION - COST Impacts aHUS Treatment

aHUS Treatment Options vary Greatly by Country

Cost Impacts aHUS Patient Care
7 out of 10 state their specialist or medical team mention COST of aHUS treatment in discussing patient
care options. 16% state cost concerns affect their treatment options or medical care. (Question #41)
Access to Treatment:
• 24% of respondents state aHUS medical care or treatment is limited by their National or Heath Ministry
policies. (Question #43)
• 29% note that cost of medical care and treatment concern them and their family.
Advancements in aHUS treatment or drug therapies: Factors or considerations (Question #45, N=224)
• Cost of new drugs would likely affect our usage - 33%
• Recommendation of our medical team - 28%
• Type of drug delivery/Ease & Convenience of New Treatment - 24%
aHUS Alliance
www.aHUSallianceAction.org
Connect with the aHUS Alliance
Emerging aHUS patient organizations – JOIN US
Independent Advocates
Affiliates: Renal, Genetic, Language-Specific, or national Rare Disease Groups
PARTNER with the aHUS Alliance – Individuals & Groups
The aHUS Alliance encourages stakeholders in every nation to connect and to
collaborate aHUS Alliance. Individuals, organizations, industry, researchers and
medical personnel are invited to participate with the 2016 September 24
campaign:
Rise above aHUS: 2016 Red Balloon aHUS Campaign
@aHUS24Sept
aHUS Awareness Day
Information & Resources: www.aHUSallianceAction.org
Join the RareConnect aHUS Community – Connect Globally
aHUS Alliance
www.aHUSallianceAction.org
GRAZIE ありがとうございます THANKS
Спасибо
MERCI
A Special THANK YOU
to aHUS Adult Patients and Pediatric Caregivers
who participated in the Patient Voice with the
2016 aHUS Global Poll
We appreciate the many aHUS researchers, physicians, organizations, and
Individuals for their support of this project.
Thanks to the RareConnect Team for hosting this
21 June 2016 aHUS Global Webinar
and to Dr. Christoph Licht
of Toronto’s Sick Children’s Hospital
aHUS Alliance
www.aHUSallianceAction.org
CONNECT
INFORM
COLLABORATE
aHUS Alliance
www.aHUSallianceAction.org
JOIN the Conversation – Network among aHUS Global Interests
Email US: [email protected]
aHUS Alliance: Be aHUS Aware – LIKE US on Facebook
aHUS Alliance on Twitter: FOLLOW @aHUSallianceAct
Follow the aHUS Awareness Day campaign: @aHUS24Sept
aHUS Alliance
www.aHUSallianceAction.org