Vascular Anomaly Research Funding sign now

To: The National Institute of Health
Stephen C. Groft, Pharm.D., Director of Office of rare Diseases, Office of Rare Diseases
National Institutes of Health, 6100 Executive Boulevard, Room 3B01, MSC 7518
Bethesda, Maryland 20892-7518NCI

Elizabeth Read-Connole, Ph.D.
NCI Representative to Office of Rare Diseases Committee Cancer Etiology
Branch, Division of Cancer Biology National Cancer Institute, NIH 6130
Executive

John E. Niederhuber, M.D., Director of the National Cancer Institute (NCI).
NCI Plaza North Room 5016 Bethesda, MD 20892-7398

Sonia I. Skarlatos, Ph.D., FAHA, Acting Director, Division of Cardiovascular Diseases, NHLBI Gene Therapy Coordinator, National Heart, Lung and Blood Institute

Rashmi Gopal-Srivastava, Ph.D.,Office of Rare Diseases, National Institutes of Health 6100 Executive Boulevard, 3B-01, Bethesda, Maryland 20892-7518

J. Fernando Arena, M.D., Ph.D., Division of Clinical and Population Based Studies Center for Scientific, Review, National Institutes of Health
6701 Rockledge Drive Room 3135, MSC 7770 Bethesda, MD 20892-7770

The Hemangioma Investigators Group has formed a consortium to address the need for research into vascular anomalies and PHACE Syndrome. This petition is in reference to RFA for the Vascular Anomalies Rare Disease Clinical Research Network

As a community of patients and families and friends who are living with vascular anomalies/PHACE Syndrome we are appealing to you to consider this application favorably. There is much to be learned about these diseases and the only way that will be accomplished is through research and trials.




While vascular anomalies are not new, the diagnosis of PHACE Syndrome was first reported in 1996. PHACE Syndrome is a rare disorder that requires the collaboration of medical disciplines including, cardiology, dermatology, hematology, oncology neurology, radiology, and surgery. There is a wide spectrum of symptoms and complications involved in vascular anomalies/PHACE Syndrome. PHACE Syndrome and the entire spectrum of vascular anomalies have been inappropriately diagnosed and managed due to an inability of the medical disciplines to collaborate on diagnosis and treatment.

Since the first reports of PHACE Syndrome appeared in the literature, there has been an increased interest by physicians and scientist. Medical Institutions across the country have recognized the need for multidisciplinary teams to manage patients and have supported research targeted at developing treatments. Unfortunately there is no funding for vascular anomaly research. The lack of funding for vascular anomalies has limited research and this is directly affecting how the growing number of diagnosed patients are managed each year. Patients and families are left with little information or understanding of the long term implications and treatments of PHACE Syndrome and other vascular anomalies.

NIH Funding for the proposed consortium would help provide desperately needed knowledge and understanding to disorders filled with so many unknowns. Our hope is that by finding solutions to complex vascular anomalies like PHACE Syndrome, there will be applicable treatments and insight into the more common vascular anomalies like hemangioma and vascular malformations.

Our patient/family led groups as well as patient advocacy organizations have been pleased with the representation within this consortium. There are doctors from many different specialties and many different medical institutions working together for one common goal. These dedicated researchers and scientists have been involved in every aspect of managing vascular anomalies/PHACE syndrome and are committed to moving forward. They have created an innovative proposal and our groups enthusiastically approve of their efforts.

By signing this petition we, as a community of patients, family members and friends show our support for requested funding by the NIH.



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Latest Signatures

  • 09 February 20161000. Nikki E
    Address, City, State, Zip Code 2216 257th Street Bedford Iowa 50833 Parent No Patient No My daughter EmmaLeigh is diagnosed with a vascular anomaly and PHACES Syndrome
  • 31 January 2016999. Betsy C
    Address, City, State, Zip Code В Parent No Patient No В
  • 27 January 2016998. Jessica S
    I support this petition
  • 18 January 2016997. William Me
    I support this petition
  • 09 January 2016996. Saskia B
    Address, City, State, Zip Code The Netherlands family
  • 08 January 2016995. Bill M
    I support this petition
  • 04 January 2016994. Jennifer B
    I support this petition
  • 02 January 2016993. Suzanne Mr
    I support this petition
  • 20 December 2015992. Sarah Marstonb
    I support this petition
  • 18 December 2015991. Margie P
    I support this petition
  • 15 December 2015990. Kathy R
    I support this petition
  • 04 December 2015989. Gerald M
    I support this petition
  • 04 December 2015988. Jennifer V
    Parent No Patient No Friend with Hemangioma
  • 03 December 2015987. Trudy Cl
    I support this petition
  • 03 December 2015986. Ron C
    I support this petition
  • 30 November 2015985. Brendan M
    I support this petition
  • 25 November 2015984. Kelly D
    I support this petition
  • 21 November 2015983. Melissa V
    Address, City, State, Zip Code 49519 Parent No I sign this for Kayla my daughter who has a venous malformation. Not enough is known about Vascular Anomalies. Please consider all of the children that this affects. Thank you
  • 13 November 2015982. Carolyn Mr
    I support this petition
  • 13 November 2015981. John P
    I support this petition
  • 12 November 2015980. Marina M
    Address, City, State, Zip Code St. Petersburg, FL Parent No Patient No please help our children get the right treatment!
  • 10 November 2015979. Ritu Cochran
    I support this petition
  • 06 November 2015978. Erin M
    I support this petition
  • 28 October 2015977. Lisa S
    I support this petition
  • 23 October 2015976. Bruno M
    Good luck!
  • 21 October 2015975. Julie B
    I support this petition
  • 21 October 2015974. Tisha D
    I support this petition

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Information

Lindsay CoxBy:
Politics and GovernmentIn:
Petition target:
National Institute of Health

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