All those who contribute their $10 will have an opportunity to contribute their personal message to the list of Official Supporters. All the names of our supporters will be listed (First name and First letter of last name) along with their personal message to the community. If you want to remain anonymous, simply type the word 'anonymous' into the space for the box titled "Message for Support Wall" (feel free to include a message to the community regardless of appearing anonymous).
I am signing this petition and submitting in my tax-deductible charitable donation in support of the Wellness Institute for Rare Conditions (WIRC).
As a patient, family member, caregiver, friend or health care professional of an individual and/or individuals born with a rare genetic condition, I am joining the voices of the rare disease community in support of the development of W.I.R.C.
There is an unmet need that this Center will help to fill. Rare disease patients need more coordinated health care from professionals with experience in diagnosing, treating, managing and researching these conditions. The medical community, in general, is not aware of how to identify, treat, or manage several rare genetic diseases, and it is often left to the patient to inform the doctor and piece together their own treatment plans, often visiting numerous specialists in different facilities and trying to coordinate their own care. This Center will provide knowledgeable, experienced health care providers to truly meet the needs of the rare disease community, in an efficient and coordinated manner. This will improve patient's with rare disease's overall health, quality of life, and even allow some of them to either return or join the workforce.
There are no cures currently established for any rare genetic disease, several don't even have established effective treatment options. I want W.I.R.C. to be developed so that more efforts can be made to find effective treatment options for rare genetic conditions and cures. The rare disease community is in desperate need of specialized treatment options and ground-breaking research to better understand the pathophysiology, mechanisms of actions, and genetic causes of several of these conditions.
I understand that EDSers United is nonprofit public charity incorporated within the state of New Jersey and that this facility will be developed within the state of New Jersey. All donations made payable to EDSers United are tax-deductible. To learn more about our organization visit us at www.EDSers.org.