Pfizer's Xyntha-administering syringe gets FDA approval
By Alaric DeArment
NEW YORK (Aug. 16) The Food and Drug Administration has approved a prefilled dual-chamber syringe made by Pfizer for treating hemophilia, Pfizer said.
The FDA approved the syringe for administering the drug Xyntha (antihemophilic factor [recombinant]) for hemophilia A. The drug is used to prevent and control bleeding episodes in patients.
"The approval of the pre-filled dual-chamber syringe is an important milestone for hemophilia patients due to its innovative, convenient reconstitution system that eliminates the transfer step," Pfizer VP marketing for specialty biologics Emil Andrusko said.
SB 971 Passed the Assembly 68-0 and We Still Need Your Help!
The good news is that SB 971 passed the Assembly 68-0. We still have received no "no" votes and only have one more procedural vote in the Senate before our bill will go to the Governor.
However, we need to prove to the Governor's office that there is a real problem that the bill is going to solve for our community and therefore the bill is truly necessary. Just because it has been so well supported in the legislature doesn't mean that this Governor might not veto the bill.
WE NEED YOUR HELP!
Please send us YOUR STORIES - tell us about the problems you or others have had with not having proper access to factor or having it not handled properly. We don't need to use names, we just need concrete examples.
For example:
Has your factor ever not been properly delivered? or stored (as a result of the delivery mechanism)?
Have you ever had trouble having access to sharps containers?
What about access issues to the type of factor that works best for you?
We also need you to SEND LETTERS:
Feel free to adapt the letter of support bellow (most of it can remain the same if you like - just change the personal parts to tell your own story). If you prefer to write your own letter that is great too. The attached fact sheet will help.
Letters can be faxed to Senator Pavley's office at (916) 324-4823. They can also be submitted directly to the Governor's office (via fax) at 916-558-3160; but please make sure Senator Pavley also gets a copy.
Forward this onto others in the community. We need everyone's help to get this across the finish line and ensure that all patients in CA are protected with these standards of service.
Robyn Ireland
Hemophilia Council of California
Click here to download letter.
Click here to download factsheet.
SB 971 Passed Assembly Floor 68-0
I am pleased to report that SB 971/Pavley passed the Assembly Floor this afternoon on a 68-0 bipartisan vote!
We had Assembly Health Chair Bill Monning (Democrat-Santa Cruz) present the bill and there was no debate. We had Audra Strickland (Republican-Camarillo) and Nathan Fletcher (Republican-San Diego) poised to assist us if we got into trouble!
Thanks to HCC Board Member Lynne Carey and PPTA advocate David Gonzalez for assisting me w/ Strickland and Fletcher.
Thanks to CSLB for helping HCC w/ the DCA and Agency!
We now move to the Senate Floor for "concurrence of Assembly Amendments" then on to the Governor's desk!
Thanks, again, for all of your help and support!
Terri
FDA Approves Wilate
HOBOKEN, N.J., Aug. 2 /PRNewswire/ -- Octapharma USA has received confirmation of orphan drug exclusivity from the U.S. Food and Drug Administration (FDA) for wilate® (von Willebrand Factor/Factor VIII Concentrate, Human), the replacement therapy developed specifically for von Willebrand Disease (VWD). The approval comes from the FDA Office of Orphan Products Development, which helps to advance the development of products that demonstrate promise for the treatment of rare diseases."In awarding orphan drug exclusivity, the FDA Office determined that wilate® offers greater viral safety than Humate-P," said Flemming Nielsen, President of Octapharma USA, the rapidly growing U.S. division of Octapharma AG, one of the world's largest human protein products manufacturers. "wilate® has received seven years of marketing exclusivity as a result of the evidence suggesting wilate® is as efficacious and safer than Humate P."
The FDA has approved wilate® for the treatment of spontaneous or trauma-induced bleeding episodes in patients with severe VWD as well as in patients with mild or moderate forms of the illness in whom the use of desmopressin is known or suspected to be ineffective or contraindicated.
wilate® is the first double virus inactivated VWF/FVIII (von Willebrand Factor / Factor FVIII), high-purity concentrate, utilizing the solvent/detergent (S/D) process and a special terminal dry-heating (TDH) step. The selected purification processes isolates the VWF/FVIII complex under highly protein-protecting conditions, resulting in a 1:1 ratio of VWF:RCo (ristocetin cofactor) to FVIII activity that is similar to normal plasma. No albumin is added as a stabilizer. wilate® is exclusively derived from large pools of human plasma collected in U.S. FDA approved plasma donation centers. wilate® contains a VWF triplet structure and VWF mulitmeric distribution similar to normal human plasma.
According to the National Institutes of Health, VWD is the most common inherited bleeding disorder and occurs in about 1 out of every 100 to 1,000 people. "The FDA orphan drug exclusivity approval for wilate® confirms Octapharma's decision to focus exclusively on the treatment of von Willebrand patients and further demonstrates Octapharma's commitment to the continued advancement of human protein therapies," said Nielsen.
For more information on wilate®, please visit www.wilateusa.com.
About the Octapharma Group
Headquartered in Lachen, Switzerland, Octapharma is one of the largest human protein products manufacturers in the world and has been committed to patient care and medical innovation for over 27 years. Octapharma's core business is the development, production and sale of high quality human protein therapies from both human plasma and human cell-lines, including immune globulin intravenous (IGIV). In the U.S., Octapharma's IGIV product, octagam® (immune globulin intravenous [human] 5%), is used to treat disorders of the immune system, and Octapharma's albumin (Human) is indicated for the restoration and maintenance of circulating blood volume. Octapharma's wilate® received orphan drug exclusivity from the U.S. Food and Drug Administration (FDA) for the treatment of von Willebrand disease (VWD). Octapharma employs over 4,000 people and has biopharmaceutical experience in 80 countries worldwide, including the United States, where Octapharma USA is located in Hoboken, N.J. Octapharma operates two state-of-the-art production sites licensed by the FDA, providing a high level of production flexibility. For more information, please visit www.octapharma.com.
Forward-looking statements
This news release contains forward-looking statements, which include known and unknown risks, uncertainties and other factors not under the company's control. The company assumes no liability whatsoever to update these forward-looking statements or to conform them to future events or developments. These factors include results of current or pending research and development activities and actions by the FDA or other regulatory authorities.
SOURCE Octapharma USA
SB 971/Pavley Passes!
HCC Board and Friends and Supporters of SB 971/Pavley --
I write to let you know that SB 971/Pavley passed the Assembly Business & Professions Committee today with unanimous, bipartisan support!
Thanks to Tony Maynard for again being our "star" witness. Thanks to Sean Hubbert, Bill Carroll, Fred Noteware, Michael Arnold and David Gonzalez for your support and for being there for the long morning hearing which continued into this afternoon!
As reported last week, our only remaining opposition to the bill is the Dept. of Consumer Affairs. They simply say that they don't see a need for the bill (but offer no amendments etc). We were able to highlight the need for standards in our testimony today. We also will be meeting with the higher ups at Dept. of Consumer Affairs with Senator Pavley's office very soon.
Assuming they go on Legislative Recess in July, we will be heard next in Assembly Appropriations Committee in August. After that we would be heard on the Assembly Floor then back to the Senate Floor for "concurrence of Assembly amendments" later in August.
We are getting closer to a victory! Thanks, again, for all of your support! Terri (HCC Legislative Advocate)
SB 971/Pavley Passes A. Health Today 19-0!
HCC Board and Friends and Supporters of SB 971/Pavley --
I write to let everyone know that SB 971/Pavley passed the Assembly Health Committee today on a 19-0 bipartisan vote!
We officially removed the opposition of the CA Hospital Association, CA Children's Hospital Association and the CA Pharmacist Association over a week ago and just this morning removed Kaiser's opposition!
Kaiser wanted a modification to the medical waste removal section of the bill and some liability protection language They also wanted to remove the intent section of the bill referring to HTC's as a model of care.
The HCC Board said "no" to removing the HTC intent section and wanted to ensure that sharps containers would be provided with instructions on their usage. This is the language everyone agreed to:
Page 7, Line 29, replace (o) with the paragraph below:
(o) Provide the patient with a sharps container and instructions as to how to dispose of the medical waste sharps, however the provider of blood clotting products shall not be liable for any acts or omissions of the patient in the handling and disposal of medical waste.
This language was discussed today in committee and the CA Hospital Assoc and Kaiser told the committee that they are now "neutral". They thanked us and Senator Pavley and her staff.
The Dept. of Consumer Affairs testified in opposition as they believe the bill is not needed. Senator Pavley told the committee that recently pharmacies had left clotting factor on patient doorsteps and so there is a definite need for the bill. HCC believes that there should be standards in place in state law so that the public pay patients and the private pay patients will have similar standards in place in CA.
We will be heard next in Assembly Business & Professions Committee next Tuesday morning. The amendments discussed above will be formally adopted in that committee.
Thanks to all of our supporters! CSL Behring (Bill and Fred), Herndon Pharmacy (Michael), PPTA (David), Sean Hubbert, and Lynne Carey were all at the hearing.
Yvette Bryant and Tony Maynard testified w/ me for HCC and both did a terrific job! Yvette is a constituent of Assembly Health Vice Chair Nathan Fletcher (Rep-San Diego/Poway). Fletcher was presiding at the hearing when our bill came up!
We will keep fighting for this important standards bill! Terri (HCC Legislative Advocate)
The California Standards of Service Bill moves to the State Assembly.
On June 2, the California Senate has passed SB 971 the Standards of Service for Providers of Blood Clotting Products for Home Use Act with no opposition (34-0). Securing bi-partisan support this bill moves to the Assembly with significant momentum. Although there is still some opposition, the bill's author, Senator Pavley, and the bill's sponsor, Hemophilia Council of California, are working hard to resolve these issues. If you're in California, call your Assembly Member's office ask to ask for support of SB 971.
To see the bill: Read SB 971.
HFA Elects New Officers
At its annual meeting, the Board of Directors of the Hemophilia Federation of America (HFA) named Mr. Paul Brayshaw as President of the national grassroots community-based organization. He was elected after serving the organization as vice president since 2008. More details (pdf).
FIRST-TIME ANNUAL MEETING ATTENDEES!
Educational Participant Grants Available for NHF’s 62nd Annual Meeting – “Marching Forward”
The National Hemophilia Foundation is pleased to offer Educational Participant Grants for first-time attendees to its 62nd Annual Meeting, “Marching Forward” in New Orleans, Louisiana, November 11-13, 2010. The Annual Meeting enables our community to come together and exchange information on a wide variety of topics, from the basics of diagnosis to the most recent and relevant developments in treatment and technology. It is the premier opportunity for networking and support for individuals and families affected by bleeding disorders.
Last year’s Annual Meeting attracted more than 2,300 participants. We anticipate that this number will continue to grow and that our gathering will become even more diverse, composed of all people with bleeding disorders.
Eligibility
In our quest to foster a more inclusive annual meeting, NHF offers a limited number of Educational Participant Grants to individuals and/or families with bleeding disorders attending the Annual Meeting for the first time. We would especially like to provide assistance to those unable to attend due to personal obstacles or other barriers. Awards will be based on these factors, as well as on need.
What the Educational Participant Grants Cover
Grants may be used to cover any of the following:
- Airfare
- Hotel
- Registration Fees
Applicants may apply for grants in one or more of these categories, for a maximum of three nights and four days.
How to Apply for Educational Participant Grants
Application forms for Educational Participant Grants may be downloaded here.
Application Deadline
Letters must be postmarked by Friday, June 25, 2010.
Where to Send the Application
National Hemophilia Foundation
116 West 32nd Street, 11th Floor
New York, NY 10001
ATTN: Chapter Services Department --AM Educational Participant Grants
For More Information contact: sroger@hemophilia.org.
Hemophilia Council of California
Advocacy Update
March 15, 2010
From: Yvette Bryant, HCC Board Chair
Terri Cowger Hill, HCC Legislative Advocate
Robyn Ireland, HCC Project Director
Subject: Sacramento State Budget & Legislative Updates:
1. HCC Sponsored Bill SB 971/Pavley Is Set for Senate Health Committee on April 14th:
HCC is sponsoring SB 971/Pavley, the Standards of Service for clotting factor proposed legislation. The bill will be heard in its first policy committee on April 14th. SB 971 will be heard in the Senate Health Committee on that day, and if it passes, will next be heard in the Senate Business and Professions Committee on April 19th. Please see attached bill and Fact Sheet. Any letters of support can be addressed to:
Hon. Fran Pavley
Member of the Senate
State Capitol
Sacramento, CA 95814
Tell Senator Pavley you are in support of her SB 971 and describe why you support the measure. Send copies to Robyn (hccassist@aol.com) at the HCC office so we can keep track of our supporters. Terri has been working hard to ensure passage of this bill from Senate Health Committee and is meeting w/ all members and staff.
2. State Budget - CA Is Facing Another Massive $20 Billion Shortfall in 2010:
CA is facing another gripping $20 Billion gap in 2010-11. This is after the State closed a $60 Billion gap last year! The non partisan Legislative Analyst is predicting $20 Billion gaps for the next several years.
The Governor is proposing to close the gap with cuts, deferrals, and is attempting to secure $6 Billion plus from the Federal Government. We have been in Special Session since the beginning of the year and so far, the Legislature has only reached agreement on a very small portion of the $20 Billion gap.
While there are no specific cuts directed at CCS and GHPP at this time, the Governor's proposal to reduce eligibility for the State's Healthy Families Program has the potential of dropping approximately 5,000 CCS eligible children from that program! We are opposing that item.
The Governor also has proposed a $2 Billion non specific cut the Medi-Cal Program which we are closely watching. The proposal also hints at limits to pharmacy benefits so Terri has already testified against that for our population. We have previously sent out the proposed Budget Language on that item and other proposed Budget Trailer Bill Language, as well. Contact Robyn if you did not get a copy of that language.
Budget Subcommittees will begin soon and will unfold this spring and summer. We will also be closely watching the May Revise for any new cuts proposed by the Governor's office and for any positive news on the revenue picture.
3. Future Leaders and HCC Annual Legislative Day:
Mark your calendars for May 10th & 11th for Future Leaders Day and May 12th for our HCC Annual Legislative Day. Please contact Robyn Ireland in Sacramento for the details! HCCassist@aol.com
Terri Cowger Hill, Owner
Cowger & Associates
Legislative Advocacy & Consulting to Improve
Health Care in California
1127 11th Street, Suite 426
Sacramento, CA 95814
Cell Phone: 916/952-3431, Voice Mail: 916/446-9103
Fax: 916/446-9109
terricowger@aol.com
Robyn Ireland
Project Director
Hemophilia Council of California
1507 21st Street, Suite 206
Sacramento, CA 95811
(916) 498-3780
hccassist@aol.com
mailto:terricowger@aol.com
SB 971 Fact Sheet (download doc)
SB 971 Senate Bill (pdf download)
Newsflash from NHF!
March 10, 2010
To NHF Chapters and Staff:
We are writing in response to community inquiries regarding the National Hemophilia Foundation (NHF) CEO Val Bias’ leave of absence, and to inform you that the NHF Board of Directors issued a notice of employment termination to Mr. Bias on February 27, 2010.The NHF Board reluctantly took this action after identifying significant performance issues, as well as violations of the governance policies of the Board, and weighing these against Mr. Bias’s accomplishments since he was named as CEO. While Mr. Bias has advanced NHF’s agenda, the nature of the issues was serious enough that the Board felt it must uphold its fiduciary responsibility to NHF and issue the notice of termination. The Board is deeply sadden by these developments and did not make this decision lightly.
In issuing the notice of termination, the Board is following the process outlined in Mr. Bias’ employment agreement. In accordance with the agreement, Mr. Bias had ten days to address the issues specified by the Board after the notice of termination was issued. Mr. Bias provided a response to Board on March 9, 2010. The Board has a duty to review this response, and will hold a meeting within 20 days for final resolution of the issues raised with Mr. Bias in the Board’s February 27 notice of termination.
The Foundation had planned to announce information about this matter once the process was completed. The Board has remained silent until now in accordance with its verbal agreement with Mr. Bias that neither the Board nor Mr. Bias would publically discuss the matter during the ten day period in which Mr. Bias was formulating his response. During that time, both parties agreed that Mr. Bias would be considered on leave from the Foundation. However, since initiating the process, we have received several inquiries and are providing this information prior to the completion of the process to address rumors and speculation that have arisen in the absence of definitive information from the Board.
The Board issued the notice of termination after identifying a number of performance issues which constitute possible cause for termination under Mr. Bias’ employment agreement, including questionable financial activities. These activities included misrepresenting to the Board the financial cost of contracts and other expenditures of NHF. In addition, an investigation, carried out by independent legal counsel and certified public accountants, indicated that Mr. Bias had repeatedly failed to comply with NHF policies governing travel and expense reimbursements. An example of this includes using the NHF credit card for personal expenses and failing to provide timely and complete expense documentation for NHF expenses charged to the corporate credit card. Such actions are considered violations of Board policies, Mr. Bias' employment agreement and a breach of his fiduciary duty to NHF.
In moving forward short term, NHF senior staff will manage the day-to-day operations of NHF to ensure that its programs and services to the community continue without interruption.
We appreciate your support and patience as we navigate through these next few weeks. The NHF Board, composed of members of the bleeding disorder community. . . mothers and fathers of children with bleeding disorders, individuals with bleeding disorders. . . remains committed to supporting NHF’s chapters and its programs and services. We will provide more information as it becomes available. In the meantime, if you have any questions or concerns, please feel free to contact either of us.
Regards,
Michael O’Connor
Thursday, March 10, 2010
Dearest Bleeding Disorders Community,
I am writing to you regarding the recent events at NHF and the letter you received Wednesday, March 9, 2010, from NHF Board Chair O’Connor and NHF Board Vice Chair Stanhope.
It is my greatest privilege to serve this community as CEO of the National Hemophilia Foundation, and in so many ways prior to this role from my time as an NHF Board member, then to NHF Board Chair, and on to Legislative Advocate during the time of AIDS. It was a great honor to have had the opportunity to participate in the writing and passage of the Ricky Ray Hemophilia Relief Fund Act of 1998, as well as advocating for the bleeding disorders community in many other ways, with the critical participation of so many amazing and truly gifted partners in this community.
Though I have not been formally terminated, I am of course very mindful of Board’s communication to the community. I want to make it clear this is not a resignation letter.
I wish to express my deep gratitude for the many well-meaning and generous sentiments in this community. There may be some who will want me to engage in a point-by-point rebuttal and fight publically about the Board’s actions. However, I want you all to know, that it is entirely my choice not to engage in a public tit-for-tat response to the points in the Board’s letter. I believe that in the end a public fray serves no one’s interests.
Although I strongly disagree with each of the Board’s conclusions, I want to state clearly that I think that this board sincerely believes that they are acting in the best interest of the NHF and doing what they need to do to protect and maintain the current state of The National Hemophilia Foundation.
As the letter from the Board Chair and Vice Chair acknowledged, there have been many accomplishments since I became CEO, and we are moving the NHF agenda forward. I am proud of the accomplishments achieved in coordination with the professional team at NHF.
In thinking about the past 18 months or so, some of our progress includes the following:
- We await a final decision from Congress, but have positioned the community’s agenda regarding the elimination of lifetime and annual caps, as well as pre-existing conditions limitations, in all three bills before Congress today.
- We have reorganized our relationship with our chapter network (47 chapters) and inspired their confidence and collaboration at a level never before enjoyed by the Foundation in its 62 year history.
- We have restructured our corporate development program, and as a result raised $8.6 million to support the development of a Chapter Services Department within the Access to Care Today, Achieve a Cure Tomorrow (ACT) initiative.
- We have developed a new more collaborative relationship with our corporate funders through the CEO Strategic Counsel that has fostered a partnership transcending previous commitments made to the Foundation.
- We have reenergized and renewed a commitment to research that will led to better treatment and cures for the entire bleeding disorders community.
- We have positioned NHF as one of two global finalists to host the World Federation of Hemophilia World Congress 2014, which will potentially generate up to $1 million that NHF could use to address global issues related to bleeding disorders and connect our organization’s network and resources to a world largely without access to care.
As of today, while I am still The National Hemophilia Foundation’s CEO, I would like to assure you that while in service in this role, I did my very best to respond to this Board’s initial notice for termination letter in the most respectful, thoughtful, careful, factual and thorough manner. I met the NHF Board of Director’s deadline to provide a response. I submitted a detailed 15-page letter, which included supporting documentation on all points in the termination letter by last Tuesday’s deadline of 5:00 p.m.
I want you to also know that since my hiring in May 2008, though I am by no means a perfect individual, as a first time CEO, I have always acted with the goal of the betterment of the bleeding disorders community, which has been the sustenance of my heart’s core for more than three decades.
When working together this community is strong. Together we have made much progress and the opportunity to continue to do so is ever present if we remain united. I firmly believe that today NHF is a stronger organization financially, politically and structurally than when I arrived as CEO. We have a great team at NHF of which I’m very proud. I take great pride in what has been accomplished and remain hopeful you and the community at large share the sentiment that NHF is on the right track. I stand ready to continue this work and would welcome the privilege of continuing to serve you in this manner.
Finally, and most important, I want to thank all of you for your tremendous contributions and dedication to the work of the community, and your tireless efforts on its behalf. Without your hard work, focus, and creativity, we would be in a very different and far more difficult place.
Best wishes and thanks to all of you,
Val D. Bias, CEO
National Hemophilia Foundation
New Baxter Program!
Baxter announces a new educational/scholarship program for all persons with hemophilia. The program is called EDUCATION ADVANTAGE and can be viewed at www.myeducationadvantage.com.
It will cover 4 areas; Educational Planning, Career Development, Health Management and Community Involvement. The program is geared toward 18-14 year old hemophilia A persons.
There is no requirement to use a specific brand of product.
Good News from Maryland!
A bill to guarantee insurance coverage for hemophilia care and access to Hemophilia Treatment Centers is being considered in Maryland. If you have friends or family there, please ask them to contact their State Senators to support Senate Bill 908 (aka SB 908) and their State House Representatives to support House Bill (aka HB 1127).
State & National Advocacy Groups Push for Groundbreaking Rx Reform Measures
Patients denied access to lifesaving medications urge passage of Nebraska bills at Feb. 16 hearing
More than a dozen state and national advocacy groups have joined Nebraska patients and healthcare providers to urge passage of two precedent-setting prescription protection bills. These laws would be the first in the nation to protect patients and their healthcare providers against unfair and restrictive insurer prescription practices. Their voices will be heard at a hearing 1:30 p.m. Tuesday, Feb. 16. Prior to the hearing that day, patients who can no longer afford or gain access to lifesaving medications will share their experiences at a rally and news conference at the State Capitol.
LB 1017 would combat restrictive insurance co-payments by ensuring that all health policies in the state include reasonable prescription drug benefits and limit the amount patients have to pay out-of-pocket for medicines their health providers prescribe. LB 1088 addresses the prevalent practice of patients being encouraged to switch to prescriptions that are similar to– but not the therapeutic equivalent of– the prescriptions their health providers ordered. Known as therapeutic substitution, the practice takes patients off medicines that work well for them and switches them to different medications that are less expensive, but not necessarily as safe or effective. For many patients, including those who will speak at the Feb. 16 news conference, no medically equivalent substitutes exist for their medications so they are forced to pay full price for their prescriptions or go without.
WHAT: News Conference in Support of Prescription Reform Bills LB 1017 and LB 1088.
WHEN: 11 a.m. – noon CT, Tuesday, Feb. 16, 2010.
WHERE: State Capitol Building, Room 1200, Lincoln, Neb.
[Note: Hearing will begin at 1:30 p.m. in room 1507.]
WHO: Alliance for Plasma Therapies; Local Patients and Advocacy Groups. Speakers will include:
- Sen. Abbie Cornett, who introduced both bills, and has heard from Nebraska patients who can no longer afford, or in some cases even obtain, the therapy they need.
- Michelle Vogel, Executive Director, Alliance for Plasma Therapies.
- Heather Overton, an epilepsy patient who has been forced to sue her insurer to obtain the medicine she needs to prevent seizures that routinely send her to the hospital.
- Polly Negrete, a former nurse and hospital manager, who has primary immune deficiency disease and motor neuron disorder. At one time, she paid $10,000 each year for just one medication and still must pay hundreds each month out-of-pocket despite being on disability.
- Lynette Anthony, an Omaha worker, whose insurer abruptly switched medication needed to control a serious skin disease from one co-pay tier to another. Instead of being 90 percent covered, she now pays $300-$400 a month for treatment.
- Carl Clark, president of the Nebraska Chapter of the National Hemophilia Foundation. His son, who has hemophilia, has seen his drug co-pays rise from $35 to more than $100 for medications needed to fight Hepatitis C acquired from a contaminated blood-clotting product.
NHF Call For Nominations
(Download following as PDF)
Hemophilia and Haiti
NCHS has been concerned about the situation in Haiti, and how it affected the hemophilia population there. We contacted the World Federation of Hemophilia, and this was their response:
"What we did so far is we asked Heidi, President of the Dominican Republic Hemophilia Association (other half of the island) if she knows anything about the need for hemophilia treatment products (Humanitarian Aid) in Haiti. She replied that although thousands of refugees are rushing into Dominican Republic, there were no people with bleeding disorders among them, so there was no need for any product donations yet. Please note that unfortunately WFH does not have contacts in Haiti (no record of people with hemophilia) and there is no registered Hemophilia Society.
"Talking to Project Share (Laurie Kelley) recently, they also confirmed that they have no current records of people with hemophilia in Haiti."
NCHS will keep you posted on any further developments.
Walk A Thon Site is Live!!
This year the Hemophilia Foundation of Northern California is pleased to be participating in NHF's Walk program.
Launched in 2008, the Hemophilia Walk is a nationwide event that raises funds and awareness about hemophilia and other bleeding and clotting disorders. Participants raise money, locally and nationally, for crucial research, advocacy and education by joining together in a fun and festive event.
On April 17, 2010 at Cesar Chavez Park in Berkeley CA walk teams will be participating in our First Annual Walk A Thon. Take a look at our walk information site for more information about how to pledge, join a team or create a team.
Now is the time to get your teams started and join us for what looks to be a fantastic and fun event! I've already started my team and raised some funds :-)
If you have any questions please don't hesitate to contact me, I am the Regional Walk Manager and eager to help in any way that I can.
Thank You!
Nancy Trunzo
Regional Walk Manager/Office Administrator
Hemophilia Foundation of Northern California
510-658-3324 office phone
nancy.trunzo@hemofoundation.org
