aHUS POLL WEBINAR – 21 JUNE 2016

May 21, 2016 in Uncategorized

     The aHUS Alliance is pleased to announce that RareConnect will offer a webinar on 21 June at 11 am EST, with aHUS expert Dr. Christoph Licht to present analysis of the 2016 aHUS survey results. The aHUS global survey closed 15 April with 233 responses from 23 countries, responding in 6 languages.

Register herehttps://www.rareconnect.org/en/community/atypical-hemolytic-uremic-syn/article/webinar-on-2016-ahus-poll

     In collaboration with the aHUS Alliance, RareConnect will host a 21 June 2016 webinar focused on analysis and interpretation of data collected during the recent aHUS global poll which was open from Rare Disease Day (29 Feb) until 15 April 2016. The webinar presenter will be Canadian aHUS expert researcher and clinician Dr. Christoph Licht of Toronto’s Sick Children’s Hospital. Viewers worldwide can participate in this event at 11am (EDT) in Toronto and New York, 8am in Seattle USA (PDT), 4pm in London (BST), and 8:30pm in Hyderabad (IST).  Find the webinar time for your area here:  http://www.worldtimebuddy.com/

     All nations within the aHUS Alliance were invited to participateon this survey subcommittee, and were encouraged to be involved with multiple aspects of the 2016 aHUS global poll. aHUS adult patients and caregivers of pediatric aHUS patients worldwide were invited to participate, and though the survey is now closed, the 2016 poll questions are viewable at http://ow.ly/YR8JK. The 2016 poll was conducted with 6 language versions available to respondents: ENG, ES, FR, IT, RUS, and Japanese.

     Gathering information on the aHUS patient experience, this 2016 poll provided a way for the aHUS community worldwide to express concerns and give insight into the challenges of aHUS. The patient and caregiver poll responses provide better understanding and insights into aHUS diagnosis, treatment, and medical care. Data from this 2016 survey additionally offers insight into how patients might more fully engage with, or become informed about opportunities and advancements in aHUS research, studies, clinical trials, and aHUS registry efforts.

      We appreciate the efforts of Dr. Christoph Licht and the RareConnect team to join in this multi-national effort and highlight aHUS poll information. Our special thanks the patients and caregivers who participated in the 2016 aHUS poll as well as those researchers, organizations, and advocates for their support. (FMI on the 2016 poll, see http://ow.ly/eHIw300arxa . A similar aHUS poll was conducted in 2014, with those results and the 2014 RareConnect webinar athttp://ow.ly/4n9k00.)

     Join us on 21 June 2016 at 11am EDT for this RareConnect webinar regarding insights and information from the 2016 aHUS global poll. Watch here and at links below for the details about webinar registration and survey result updates.

FMI and LINKS:

Follow the RareConnect webinar and the 2016 aHUS poll updates and on Twitter: @aHUSallianceAct

2016 aHUS Global Poll, view the Questions:http://www.ahusallianceaction.org/survey/. Contact:info@ahusallianceaction.org

Final survey results, and the archived RareConnect webinar, will be posted onwww.ahusallianceaction.org

aHUS Awareness Day is 24 September 2016: Follow on Twitter @aHUS24Sept

More About the aHUS Alliance: 
The aHUS Alliance, an umbrella group of 15 nations with aHUS patient groups, includes among their goals: supporting aHUS patient groups around the world, assisting national and global initiatives regarding information about medical and patient issues, providing and promoting the patient viewpoint, and improving interactions among all stakeholders involved with aHUS treatment and research.

 

Only 6 Months of Soliris for Dialysis Patients in Ontario, Canada. Let’s Do Something About It!

May 2, 2016 in Uncategorized

In February, 2015, the Ontario government announced that it would provide interim funding for Soliris for aHUS patients who meet “defined clinical criteria”.  This was great news for those who were new patients with aHUS.  But those who were already sick, on dialysis, and in need of a kidney transplant had been denied funding.  And without access to Soliris, a transplanted kidney would suffer the same aHUS attack as their native kidneys.

Recently, Health Minister Dr. Eric Hoskins of Ontario announced that Soliris would finally be made available to those on dialysis and in need of a kidney transplant.  Great news, right?  Well, sort of.  The catch here is that these patients will get a maximum of 6 months of Soliris and we all know that once Soliris is stopped, the transplanted kidney may be destroyed.  These patients and their doctors are not likely to want to take the chance of triggering another aHUS attack so they are not likely to go through with a kidney transplant. 

 

There are those who have been waiting years to have a chance for a transplant.  Now they are told they can get a transplant but they can only keep this kidney for 6 months.  Makes no sense.

 

aHUS Canada will be meeting in May with the bureaucrats that work under the Health Minister and are making the decisions. Please help our Canadian friends by sending Dr. Hoskins email telling him how you feel about this.  If you have had a kidney transplant and are on Soliris, please tell Dr. Hoskins’ your story.  And if you have lost a transplanted kidney without Soliris and then had a successful transplant with Soliris, that could make a big impact on getting more than 6 months for our friends in Canada.

Here are 2 email addresses for Dr. Hoskins:

 

ehoskins.mpp@liberal.ola.org 

eric.hoskins@ontario.ca

 

You can also go to aHUS Canada’s email tool (below) and select Ontario and Dr. Hoskins.  You can send their email as is or change it to make it more personal.

http://www.ahuscanada.org/advocacy-support/petition-letter/

 

aHUS Global Poll 2016 – Results Update

April 30, 2016 in Uncategorized

      A worldwide survey of aHUS adult patients and pediatric caregivers was launched on Rare Disease Day (29 Feb 2016) and continued through 15 April 2016 to accommodate a rollout of survey translations in 6 languages.     The survey premise was that patient and caregiver poll responses can provide better understanding and insights into aHUS diagnosis, treatment, and medical care from the patient perspective.  A similar effort was conducted in partnership with RareConnect in 2014, with 214 respondents from 17 nations while the 2016 global poll was a multi-national volunteer effort that saw 233 replies from respondents from 23 countries. (Link below to 2014 poll results)  Our special thanks to the patients and caregivers who participated with the 2016 aHUS global poll. We also appreciate the many physicians, aHUS researchers, and organizations that supported this survey through patient connections and across social media.

     The 2016 global survey questions were suggested from various sources, to include topics from the June 2015 aHUS Alliance multi-national meeting of patient organizations in London, online discussions across aHUS social media outlets, and interactions with aHUS researchers in conjunction with input from various interfaces within the aHUS arena.  Additionally, some poll items were designed to help patient groups better understand the needs of their members and to explore the differences in care, diagnosis and treatment access around the world.

    All nations within the aHUS Alliance were invited to participate with the 2016 survey subcommittee, and were encouraged to be involved with multiple aspects of the 2016 aHUS global poll. The aHUS Alliance, an umbrella group of 15 nations with aHUS patient groups, includes among their goals: supporting aHUS patient groups around the world, assisting national and global initiatives regarding information about medical and patient issues, providing and promoting the patient viewpoint, and improving interactions among all stakeholders involved with aHUS treatment and research.

    The survey was designed in part to help patient groups better understand the needs of their members and to explore the differences in care, diagnosis and treatment access around the world.  Information from the 2016 aHUS global poll also can provide researchers,clinical trial investigators and industry a better perspective of how to reach physicians and their patients.  Data from the 2016 aHUS global poll  may provide aHUS patient organizations data to present to their government’s policy makers, healthcare industry, and Health Ministers concerning options in their nations for continuation or expansion of patient care and treatment options. 

    The 2016 aHUS global survey should provide an updated view to the 2014 RareConnect poll which centered on how patients and their families move through the process of obtaining a diagnosis, while also providing survey information about various impacts or consequences of the disease on their lives. Additionally, new survey information might also offer some insight into how patients might more fully engage with, or become informed about opportunities and advancements in aHUS research, studies, clinical trials, and aHUS registry efforts.  We are pleased to announce that the RareConnect team will as in 2014 once again partner with the aHUS Alliance to host a webinar on interpretation of the 2016 aHUS global poll results, with analysis and commentary by Dr. Christoph Licht – aHUS researcher and clinician at Toronto’s Sick Kids Hospital.  Following is a brief list to include additional information, and where to follow 2016 aHUS global poll results and updates.

    

 

A preview of Select Survey Items, and Links FMI:

 

     Reply Rates.   233 responses were received from aHUS adult patients or pediatric caregivers in 23 different countries. (See chart below)

 

      Age.  Survey responses were almost equally divided by patient age with slightly over half of the data gathered pertaining to adult patients as a group, versus just under 50% of the survey data related to aHUS pediatric patients.

     Regarding age of first aHUS activity in the patient, the most common initial onset age range was reported as  21 to 35 years old, while the least common was patients first experiencing aHUS activity over the age of 65 years old.

 

     Gender.  About two-third of the aHUS patients represented in our 2016 aHUS global poll were female patients (of any age) while only about one-third were male patients.

 

    Time of Year, for Initial Onset.   We divided the calendar year into quarters:  Jan-March, April-June, July-Sept, and Oct-Dec.  There were approximately the same number of patients presenting with an initial onset of aHUS activity in three of the four quarters.  Respondents indicated a distinctly higher rate for the patient’s initial aHUS episode during the months of October through December.

  

Country                        # Responses by Country

USA                                        100

UK                                            42

Canada                                      25

France                                        8

Australia                                     8

Japan                                         8

Italy                                            7

India                                           6

Belgium                                      5

Netherlands                                 4

Pakistan                                     4

New Zealand                               3

Germany                                     2

Turkey                                        2

Brazil                                          1

Bulgaria                                      1

China                                          1

Cyprus                                        1

Denmark                                     1

South Africa                                1

Sweden                                      1

Switzerland                                 1

Vietnam                                      1

 

 

For More INFO:

 

2016 aHUS POLL – Update TWO:  aHUS Global Survey – Open through 15 April  (RareConnect blog hyperlink),,or see http://ow.ly/4n9jr1

 

2016 aHUS POLL – Update ONE:   Mid-Point Survey Results (RareConnect blog hyperlink), or see 

http://ow.ly/4n9jAR 

 

Info about the 2016 aHUS POLL – LAUNCH:  Launch of 2016 aHUS Global Surveyor see

http://ow.ly/4n9jMj

 

Click this link:  2014 aHUS global poll, in partnership with RareConnect:  Results, Video- Webinar, and Commentary or see http://ow.ly/4n9k00

 

 For Questions about the 2016 aHUS poll, email info@ahusallianceaction.org 


Survey results will be posted on www.ahusallianceaction.org,
 follow updates on

Twitter @aHUSallianceAct

(From a blog posted earlier to RareConnect )

 

2016 aHUS Family Conference – Register for the Nov. 4-6th Mtg

April 25, 2016 in Uncategorized

     The Atypical HUS Foundation is pleased to announce that the aHUS Family Conference**, in conjunction with The University of Iowa, will be held in Iowa City, Iowa on November 4-6, 2016 at the Sheraton Iowa City Hotel.  Registration is limited, FMI see details at the Eventbrite registration site:   http://ow.ly/4n2v06 .  Questions about aHUS Family Conference?   There is a direct way to “Contact the Organizer” and get your questions answered.   At the end of the Eventbrite event description is an envelope icon (just above the map).  Click “Contact” and send a message to The Atypical HUS Foundation.  An Events listing for The Atypical HUS Foundation’s aHUS Family Conference in Iowa is located at: http://atypicalhus.ning.com/events/ahus-family-conference-iowa

 

     From the University of Iowa website: (http://www.medicine.uiowa.edu/morl/events/)

“This collaborative effort will bring you the latest medical updates regarding atypical HUS (aHUS).  The aHUS clinicians and research teams at the University of Iowa will provide an entire day of aHUS medical and research information on Saturday, November 5th.  You will learn about the latest in aHUS diagnosis, treatment, transplantion and genetics, and the basics of “What is complement?” and How to manage chronic illness”.

The weekend offers a unique opportunity for patients and families living with aHUS to meet one another and to discuss common issues.  The conference will conclude with a roundtable discussion where patients and families share stories and tips about living with aHUS.  Please contact Amy Weaver at amy-weaver@uiowa.edu with any questions about the conference.”

 

     Currently representatives from the aHUS Alliance, an umbrella group of 15 nations with aHUS patient groups, are forming plans to attend the Iowa conference and to additionally hold a global advocacy meeting.

**Portions of this event are made possible through a generous grant from Alexion Pharmaceuticals, Inc.

Looking for aHUS information closer to home?  

Global Genes offers regional aHUS Meetups across America, to include one physician presentation among other great features.  Check out their aHUS events at 

https://globalgenes.org/ahus/

OMS721: Omeros update re aHUS Clinical Trial

April 21, 2016 in Uncategorized

     In a 20 April 2016 press release, the Omeros Corporation has announced initiation of “patient dosing in its OMS721 Phase 2 program in corticosteroid-dependent renal diseases. The Phase 2 clinical trial of OMS721, the company’s lead mannan-binding lectin-associated serine protease-2 (MASP-2) inhibitor being developed for complement-related diseases…”

 

     From the Omeros press release, “This new trial expands the company’s MASP platform, which includes an OMS721 Phase 3 program in progress for the treatment of atypical hemolytic uremic syndrome (aHUS) as well as an ongoing Phase 2 program of OMS721 for the treatment of other thrombotic microangiopathies (TMAs).  This new Phase 2 clinical trial includes patients with corticosteroid-dependent IgA nephropathy, membranous nephropathy, C3 glomerulopathy and lupus nephritis. Evidence implicates the complement system, and specifically the lectin pathway, in the pathogenesis of each of these serious diseases.”

 

FMI, see the full press release:   http://ow.ly/4mWHvv

Overview: Potential aHUS New Drugs in development:  http://ow.ly/4mWIA7

This information has been re-posted from the

aHUS global webpage at RareConnect, which is available in 6 languages.

aHUS Global Survey – Participate Today, ends 15 April

April 13, 2016 in Uncategorized

2 DAYS LEFT – All aHUS adult patients and caregivers of pediatric aHUS patients worldwide are invited to participate in the

2016 global aHUS poll at http://ow.ly/YR8JK, survey available in 6 languages.

Ends 15 April 2016

     All aHUS adult patients and caregivers of pediatric aHUS patients worldwide are invited to participate in the 2016 global aHUS poll at http://ow.ly/YR8JK.   With 2 days left to respond, the survey is open through 15 April.  Patient and caregiver poll responses can provide better understanding and insights into aHUS diagnosis, treatment, and medical care.  Patient needs should be the center of medical care and decisions, and the patient’s perspective is important in a holistic medical care plan. 

     Data from this 2016 survey will offer insight into how patients might more fully engage with, or become informed about opportunities and advancements in aHUS research, studies, clinical trials, and aHUS registry efforts.

     Gathering information on the aHUS patient experience, this 2016 poll provides a way for the aHUS community worldwide to express concerns and give insight into the challenges of aHUS.   The survey is available in 6 languages: ENG, ES, FR, IT, RUS, and Japanese.

 

Follow 2016 poll updates and results on Twitter:   @aHUSallianceAct

Take the 2016 global Survey:  http://www.ahusallianceaction.org/survey/

FMI, and interim Survey Results:  https://www.rareconnect.org/en/community/atypical-hemolytic-uremic-syn/forum/topic/ahus-global-survey-open-through-15-april-2016

Thanks to RareConnect, an initiative of EURORDIS

for their support of this poll and the global aHUS community on RareConnect.

This content appeared first on RareConnect.

aHUS Global Survey – Update: Info as of April 2, 2016

April 3, 2016 in Uncategorized

aHUS Global Survey – Open through 15 April 2016

Share your aHUS journey, survey in 6 languages (for aHUS Patients & Pedi Caregivers):

http://www.ahusallianceaction.org/survey/

(reposted from the original Article on the aHUS Global Webpage At RareConnect)

 

     The 2016 aHUS global survey just launched in 2 new translations, now making this poll available in Japanese and Russian along with Italian, Spanish, French, and English versions.  Due to the rollout of these new additional languages, the 2016 aHUS poll will remain open through 15 April to encourage responses from aHUS adult patients and caregivers of pediatric patients.

 

     Patient and caregiver poll responses can provide better understanding and insights into aHUS diagnosis, treatment, and medical care from the patient perspective.  The 2016 global survey questions were suggested from various sources, to include topics from the June 2015 aHUS Alliance multi-national meeting of patient organizations in London,  online discussions across aHUS social media outlets, and interactions with aHUS researchers in conjunction with input from various interfaces within the aHUS arena. Additionally, some poll items were designed to help patient groups better understand the needs of their members and to explore the differences in care, diagnosis and treatment access around the world. 

 

     The 2016 aHUS global survey should provide an updated view to the 2014 RareConnect poll which centered on how patients and their families move through the process of obtaining a diagnosis, while also providing survey information about various impacts or consequences of the disease on their lives. (In partnership withRareConnect in 2014, with link below, had 214 respondents from 17 nations and responding to outreach in 6 different languages.) Additionally this survey information might also offer some insight into how patients might more fully engage with, or become informed about opportunities and advancements in aHUS research, studies, clinical trials, and aHUS registry efforts.

     As of 2 April 2016, here are select data from the global poll which will remain open through 15 April.  The 2016 aHUS global poll currently has had 180 respondents from patients or pediatric caregivers from 19 countries.  Pediatric caregivers were 47% of survey participants, with 53% of respondents identifying themselves as adult aHUS patients.  One survey question sought data related to months  of aHUS onset for patients, with seasonal onset distribution so far noted as:  Jan-March 24%, Apr-June 19%, July-Sep 24% and Oct-Dec onset period at 33% noted by respondents as of this interim survey update.

 

     Below are country participation rates so far, with additional information and links related to this aHUS global survey.   Access the 2016 aHUS Global Survey of Patients and Caregivers at: http://www.ahusallianceaction.org/survey/   

(Available in 6 languages:  Spanish, French, Italian, Russian, Japanese, and English) 

Follow the survey updates on Twitter at:   @aHUSallianceAct 

 

Country

# of Responses

% Percent of Total Responses

USA (United States of America)

75

42%

UK (United Kingdom)

40

22%

Canada

21

12%

France

6

3%

India

6

3%

Italy

6

3%

Australia

5

3%

Netherlands

3

2%

New Zealand

3

2%

Pakistan

3

2%

Germany

2

1%

Japan

2

1%

Turkey

2

1%

Belgium

1

1%

Brazil

1

1%

Bulgaria

1

1%

Cyprus

1

1%

Denmark

1

1%

Switzerland

1

1%

 

 

For MORE INFO:

 

Click this link: Mid-Point Survey Results (RareConnect blog), or see 

https://www.rareconnect.org/en/community/atypical-hemolytic-uremic-syn/forum/topic/2016-ahus-global-poll-midpoint-results

 

Click this link:  Launch of 2016 aHUS Global Surveyor see

http://atypicalhus.ning.com/profiles/blogs/ahus-global-survey-for-patents-caregivers-launched-rare-disease-d

 

Click this link:  2014 aHUS global poll, in partnership with RareConnect:  Results, Video- Webinar, and Commentary or see https://www.rareconnect.org/en/community/atypical-hemolytic-uremic-…

 

For questions regarding the survey, please contact info@ahusallianceaction.org

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Mid-Point Results – 2016 aHUS Global Survey

March 17, 2016 in Uncategorized

The following blog was originally posted on the RareConnect global aHUS webpage:

Update:  MARCH 30, 2016  

NEW – Survey now in 6 languages, with survey end date extended until April 15, 2016 !

There are new 2016 aHUS global survey translations in Japanese and Russian were added on March 30th, to encourage participation by Japanese and Russian patients,

All 6 languages are available by selecting a specific language button (ES- Spanish, FR- French, IT-Italian, ENG-English, RUS- Russian, and Japanese) on the global survey platform at http://www.ahusallianceaction.org/survey/

     The 2016 aHUS global survey of patients and caregivers launched on Rare Disease Day, 29 February and continues to be open to respondents in all nations through the end of March.  A similar effort was conducted in partnership with RareConnect in 2014.  That poll resulted in obtaining information from 214 respondents within 17 nations, and who responded to outreach in 6 different languages. 

 

      Similar to the effort 2 years ago, the 2016 global poll includes questions on common themes familiar to patients with rare diseases.  Not surprisingly, these survey  topics were seen widely on Rare Disease Day as well:  barriers to diagnosis, access to treatment, availability of genetic testing, need for increased research efforts, participation in registries and clinical trials, and better/more information about their rare disease.

     All nations within the aHUS Alliance were invited to participate on the 2016 survey subcommittee and were encouraged to be involved with multiple aspects of the 2016 aHUS global poll.  The aHUS Alliance, an umbrella group of 15 nations with aHUS patient groups, includes among their goals:  supporting aHUS patient groups around the world, assisting national and global initiatives regarding information about medical and patient issues, providing and promoting the patient viewpoint, and improving interactions among all stakeholders involved with aHUS treatment and research.

     Here some of the 2016 aHUS global survey results at mid-month, 16 March 2016.  (See below for earlier stats and for FMI regarding the poll).  The poll is currently being translated into French, Italian, and Spanish and will be available soon.  We are pleased to announce a collaborative effort with RareConnect to host a post-survey analysis commentary, with details to be announced as soon as plans are finalized. 

 

As of 16 March 2016, here are select statistics from the 2016 aHUS global poll:

 

  • 113 responses:  adults 53%, on behalf of pediatric patients 27%

 

  • Country response rates: 

 

Country Name:                                    Number of survey responses:

USA (United States of American)                    53

UK (United Kingdom)                                      22

Canada                                                          19

Australia                                                          4

Germany                                                          2

India                                                                2                                            

Netherlands                                                      2

New Zealand                                                    2

Belgium                                                           1 

Brazil                                                              1 

Bulgaria                                                           1 

Denmark                                                          1 

Pakistan                                                          1 

Turkey                                                             1 

 

  • Genetic Screening (select data):

 

30% of respondents (N=29) indicated CFH (Factor H)

26% of respondents (N=25) indicated genetic screen results were inconclusive/genetic cause not known

13% of respondents (N=12) indicated genetic test reults are still pending at present

7% of respondents (N=7) indicated CFI (Factor I)

 

      We encourage aHUS patients and caregivers in all nations to participate in the 2016 aHUS global survey at http://www.ahusallianceaction.org/survey/

 

LINKS: 

 

2016 aHUS Global Survey of Patients and Caregivers:  http://www.ahusallianceaction.org/survey/    

 

Follow the survey updates on Twitter at:   @aHUSallianceAct

 

Prior blog about the 2016 global Survey:  http://atypicalhus.ning.com/profiles/blogs/ahus-global-survey-for-patents-caregivers-launched-rare-disease-d

 

2014 aHUS global poll:  Results, Video, and Commentary:  https://www.rareconnect.org/en/community/atypical-hemolytic-uremic-syn/article/atypical-hus-webinar-with-dr-tim-goodship

 

For questions regarding the survey, please contact info@ahusallianceaction.org

Pain

March 9, 2016 in Uncategorized

Hi ! Just hoping someone sees this and has some sort of idea as to what I am talking about. I was diagnosed with atypical HUS June 2015. Since then my kidneys have been improving but I have INTENSE left side pain. It is right below my left kidney. After ct scans, getting my appendix removed and ultra sounds. No one is finding a reason for my pain. I am so frustrated. I am learning what I can about AHUS but does anyone have chronic pain with this disease?

aHUS Global Survey for Patents & Caregivers – Launched Rare Disease Day 2016

March 8, 2016 in Uncategorized

     The aHUS Alliance, an umbrella group of 15 nations with aHUS patient groups, launched a worldwide survey of aHUS patients and caregivers to mark Rare Disease Day 2016 (29 February).  A similar effort was conducted in partnership with RareConnect in 2014, with 214 respondents from 17 nations and responding to outreach in 6 different languages.  The 2014 poll included questions on common themes familiar to patients with rare diseases and echoing broadly on Rare Disease Day:  barriers to diagnosis, access to treatment, availability of genetic testing, need for increased research efforts, participation in registries and clinical trials, and better/more information about their rare disease.

      Rare Disease Day, created in 2008 by EURORDIS, helps the world to better understand the challenges and support needs faced by rare disease patients and their families.  This special day serves to underscore the need to share knowledge about all rare disease issues and information, and also champions the call for development of new research for diagnostics and treatment.  Rare Disease Day historically has included momentum for advancement of national plans and policies for rare diseases in a number of countries as well.  To honor the intent of the day with an action of collaborative advocacy, advocates within the aHUS Alliance chose Rare Disease Day to launch its 2016 aHUS global poll.

     In 2014, the global aHUS survey brought some interesting facts to light and we expect similar value in the 2016 survey results.  After only two days, the 2016 aHUS global poll garnered responses from 34 aHUS patients and caregivers in 8 nations, expanding in the first week for a total of 78 survey respondents from 10 countries.  This year’s poll will be open during all of March 2016, with survey results to expected to be available in both global data and country-specific formats.

 From the aHUS Alliance commentary on 2014 aHUS poll results:

Of the 214 aHUS patients included in the Survey almost two thirds (64%) were reported as being female with just 36% being male (Q2). There appeared to be no gender difference in respondents up to 18 years (41 to 41) but it is in the adult group that females vastly outnumber males (95 to 37). Only in the preteens group do boys slightly outnumber girls (36 to 32). Children up to 10 years of age were the largest reported group (28%) and the next largest group (21%) were aged 30 to 40 years (Q3). The average age of all respondents was 27 years.

The majority of patients (54%) reported that they had their first severe episode of aHUS before their 21st birthday and for most of those it was even before they were 10 years old. Very few became ill (4%) after their 50th birthday so most of the remaining patients became ill in early adult hood to middle age (Q5). The average time respondents have been living with the illness is 8 years, making 19, the average age of onset.

To read the rest of the aHUS Alliance 2014 poll commentary, click HERE.

To access 2014 RareConnect aHUS global poll charts and graphs, click HERE.

To view Dr. Tim Goodship’s webinar on interpreting 2014 RareConnect aHUS global. click HERE to view Dr. Goodship’s webinar. (with links to slides and poll assets)

 

     So why launch an aHUS global poll in 2016?  Certain questions and topics have repeatedly appeared within patient communities, aHUS social media outlets, and within meetings such as the aHUS global conference of nations in London 28 June 2015.  Atypical HUS patient groups within the aHUS Alliance network to connect information, opportunities, and stakeholders within the aHUS arena.  In the orphan drug arena, the landscape is rapidly changing.  Though people with atypical HUS face the threat of a chronic disease with life-threatening health crises, most nations have limited access to full treatment options.  Clinical trials, diagnosis advancements, research updates, and development of complement inhibitors all have tremendous impact on patient lives.  But is there a way to provide researchers, clinicians, and industry insight into how best to interface with patients and patient organizations to the benefit of all stakeholders?  Is there a way to involve aHUS patients and caregivers worldwide as valued partners in patient care, to include even those isolated patients currently not represent by an aHUS patient organization?  Can patient experiences regarding aHUS diagnosis and treatment issues provide valuable insights for policy makers and the healthcare community?

      Members within the aHUS Alliance think meaningful information from the 2016 aHUS global poll can provide researchers, clinical trial investigators and industry a better perspective of how to reach physicians and their patients.  The survey also was designed to help patient groups better understand the needs of their members and to explore the differences in care, diagnosis and treatment access around the world. We believe the data from the 2016 aHUS global poll additionally will provide aHUS patient organizations data to present to their government’s policy makers, healthcare industry, and Health Ministers concerning options in their nations for continuation or expansion of patient care and treatment options. 

     We encourage all individuals – all nations – all aHUS patient organization to encourage aHUS patients and caregivers around the world to participate in the 2016 aHUS global survey.

 

Click HERE to view a blog regarding 2016 possibilities for potential new aHUS treatments.

Click HERE for the 2016 aHUS global survey.

Survey Results will be posted on www.ahusallianceaction.org   

E: Info@aHUSallianceaction.org           Twitter:  @aHUSallianceact

Blog about the survey, from patient organization Atypical HUS India

March 16, 2016, UPDATE:   Click the link to read the

 Mid-Point Survey Blog at RareConnect 

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