Bylaws
of the
NATIONAL FABRY DISEASE FOUNDATION, INC.

Article 1
Name, Purposes, Offices

Section 1.1. Name

The name of the organization is National Fabry Disease Foundation, Inc.

Section 1.2 Purposes

The mission of the National Fabry Disease Foundation (NFDF) is to help ensure that individuals with Fabry disease are identified, diagnosed and treated in time to avoid a diminished quality of life or life threatening consequences, to provide assistance to individuals with Fabry disease and their families, to provide Fabry disease education and awareness, to promote continued data gathering and research to improve treatment opportunities and to find a cure.

The primary broad purposes of this corporation are to support the greater Fabry disease community with education, patient identification, assistance, research and advocacy.

Section 1.3 Principal Office

The principal office of the corporation may be located within or outside the Commonwealth of Virginia as determined by the Board of Directors.

Article 2
Directors

Section 2.1. Number

The corporation shall have a minimum of five and a maximum of eleven directors, including the President/CEO of the Corporation. Collectively the directors shall be known as the Board of Directors. An odd number of directors shall be maintained if possible to prevent tie votes. Directors shall elect their successors, except that the President/CEO shall serve ex-officio, with vote, concurrent with his service as President/CEO.

Section 2.2. Qualifications

Directors shall be of the age of majority in the Commonwealth of Virginia. Other qualifications for directors of this corporation shall be as follows: The directors will have a range of qualifications to address as many of the following skills as possible or practicable such as the skills and experiences of general management, non-profit management, board membership, administration, legal, healthcare, medical operations, finance, accounting, education, medical research, marketing, fund raising, public relations, media, patient advocacy, information management and other skills as appropriate.

Section 2.3. Powers

Subject to the provisions of the laws of this state and any limitations in the articles of incorporation and these bylaws relating to action required or permitted to be taken of this corporation, the activities and affairs of this corporation shall be conducted and all corporate powers shall be exercised by or under the direction of the board of directors.

Section 2.4. Duties

It shall be the duty of the directors to:

a. Perform any and all duties imposed on them collectively or individually by law, by the articles of incorporation, or by these bylaws;

b. Provide strategic policy and guidance to the corporation, and provide by resolution the appropriate thresholds for actions and activities the president/chief executive officer may execute independently within the intent of the board of directors so the president/chief executive officer may effectively manage the day-to-day operations.

c. Elect and remove, employ and discharge, and, except as otherwise provided in these bylaws, prescribe the duties, supervise, and fix the compensation of the president/chief executive officer of the corporation.

d. Meet at such times and places as required by these bylaws or resolutions;

e. Register their postal and electronic addresses with the secretary of the corporation, and notices of meetings mailed or provided electronically to them at such addresses shall be valid notices thereof.

Section 2.5. Term of Office

Each director will serve a three year term, renewable for any number of additional terms, consecutive or otherwise, until his or her successor is elected and qualifies, provided, however, that the president/chief executive officer may serve indefinitely concurrent with his service as president/chief executive officer.

Section 2.6. Compensation

Directors shall serve without compensation except for a reasonable reimbursement for travel, lodging, per-diem and other reasonable expenses incurred in the performance of their duties, provided there is appropriate documentation of the expenses and the types of expenses have been approved by the Board of Directors. Directors who also serve in staff positions on behalf of the organization may be compensated reasonable salaries and benefits in their role as employees of the Corporation.

Section 2.7. Conflict of Interest

In the event any director has a conflict of interest that might properly limit such director's fair and impartial participation in Board deliberations or decisions, such director shall inform the Board as to the circumstances of such conflict. If those circumstances require the nonparticipation of the affected director, the board may nonetheless request from the director any appropriate non-confidential information which might inform its decisions. "Conflict of Interest," as referred to herein, shall include but shall not be limited to, any transaction by or with the Corporation in which a director has a direct or indirect personal interest, or any transaction in which a director is unable to exercise impartial judgment or otherwise act in the best interest of the Corporation.

No director shall cast a vote, nor take part in the final deliberation in any matter in which he or she, members of his or her family, or any organization to which such director has allegiance, has a personal interest that may be seen as competing with the interest of the Corporation. Any director who he or she believes may have such a conflict of interest shall so notify the Board prior to deliberation on the matter in question, and the Board shall make the final determination as to whether any director has a conflict of interest in any matter. The minutes of the Board meeting shall reflect disclosure of any conflict of interest and the recusal of the interested director.

It is considered a conflict of interest for any director to serve on the Board of Directors of another nonprofit organization with a similar mission, that serves similar constituencies, or that competes for the same funding sources.

Section 2.8. Place of Meetings

The first and third quarterly meetings, and other occasional meetings as provided by the Board, shall be held at the local area of principal office of the Corporation unless otherwise provided by the Board or at such other place as may be designated from time to time by resolution of the Board of Directors.

Section 2.9. Regular Meetings

Regular meetings of the Board shall be held quarterly. Unless otherwise provided by the Board the first and third quarterly meetings will be held in person while the second and fourth meetings may be held by teleconference or other electronic means that permits all members to participate equally in the proceedings of the Board.

Directors shall be initially appointed by the president and thereafter be elected by a majority vote of the Board of Directors. Voting for the election of Directors shall be by written secret ballot. Each director shall cast one vote per open position to be filled thru the election. The candidates receiving the highest number of votes shall be elected to serve on the Board.

Section 2.10. Special Meetings

Special meetings of the Board of Directors may be called by the chair of the Board, the Vice chair, the Secretary, by petition of a majority of the directors in office, or, if different, by the persons specifically authorized under the laws of this state to call special meetings of the Board. Such meetings shall be held at the local area of the principal office of the Corporation or, if different, at the place approved by a majority vote of the Board of Directors.

Section 2.11. Notice of Meetings

Unless otherwise provided by the articles of incorporation, these bylaws, or provisions of law, the following provisions shall govern the giving of notice for meetings of the Board of Directors:

a. Regular Meetings. A thirty day minimum notice need be given of any regular meeting of the Board of Directors, unless otherwise provided by a majority vote of the Board of Directors.

b. Special Meetings. A seven day minimum prior notice shall be given by the secretary of the Corporation to each director of each special meeting of the board. Such notice may be oral or written, may be given personally, by first class mail, by telephone, by email or by facsimile machine, and shall state the place, date, and time of the meeting and the matters proposed to be acted upon at the meeting. In the case of facsimile or email notification, the director to be contacted shall acknowledge personal receipt of the facsimile or email notice by a return message or telephone call within twenty-four hours of the first facsimile transmission.

c. Waiver of Notice. Any director who attends a meeting shall be considered to have waived the requirement of notice unless he/she attends the meeting strictly for the purpose of objecting to any failure to provide notice. Further, whenever any notice of a meeting is required to be given to any director of this corporation under provisions of the articles of incorporation, these bylaws, or the law of this state, a waiver of notice in writing signed by the director, whether before or after the time of the meeting, shall be equivalent to the giving of such notice.

Section 2.12. Quorum for Meetings

A quorum shall consist of fifty percent or greater of the members of the Board of Directors.

Except as otherwise provided under the articles of incorporation, these bylaws, or provisions of law, no business shall be considered by the board at any meeting at which the required quorum is not present, and the only motions which the president shall entertain at such meeting are motions to reschedule the meeting and to adjourn.

Section 2.13. Majority Action as Board Action

Every act or decision done or made by a majority of the directors present at a meeting duly held at which a quorum is present is the act of the Board of Directors, unless the articles of incorporation, these bylaws, or provisions of law require a greater percentage or different voting rules for approval of a matter by the Board.

The Board of Directors may take action without a meeting if written consent to the action is signed by all of the directors.

Section 2.14. Conduct of Meetings

Meetings of the Board of Directors shall be presided over by the chair of the board, or, in his or her absence, the vice chair of the board or; in the absence of each of these persons, by a chair chosen by a majority of the directors present at the meeting. The secretary of the Corporation shall act as secretary of all meetings of the Board, provided that, in his or her absence, the presiding officer shall appoint another person to act as secretary of the meeting. At all meetings of the Board of Directors, general rules of parliamentary procedure shall govern, provided they are not inconsistent with these bylaws and any rules of order of this corporation may adopt.

Section 2.15. Vacancies

Vacancies on the board of directors shall exist (1) on the death, resignation, or removal of any director, and (2) whenever the number of authorized directors is increased.

Any director may resign effective upon giving written notice to the president of the board, the secretary, or the Board of Directors, unless the notice specifies a later time for the effectiveness of such resignation. No director may resign if the corporation would then be left without a duly elected director or directors in charge of its affairs, except upon notice to the Office of the Attorney General or other appropriate agency of this state.

Directors may be removed from office, with or without cause, by a two-thirds vote of the Board of Directors. Any director who is absent for two quarterly meetings in a 12 month period may be removed by a majority vote of the board of directors.

Unless otherwise prohibited by the articles of incorporation, these bylaws, or provisions of law, vacancies on the Board may be filled by approval of a majority the Board of Directors. If the number of directors then in office is less than a quorum, a vacancy on the Board may be filled by approval of a majority of the directors then in office or by a sole remaining director. A person elected to fill a vacancy on the Board shall hold office until the next election of the Board of Directors or until his or her death, resignation, or removal from office.

Section 2.16. Nonliability of Directors

Directors shall not be personally liable for the debts, liabilities, or other obligations of the corporation.

Section 2.17. Indemnification by Corporation of Directors and Officers

Every member of the Board of Directors, officer or employee of the Corporation may be indemnified by the corporation against all expenses and liabilities, including counsel fees, reasonably incurred or imposed upon such members of the Board, officer or employee in connection with any threatened, pending, or completed action, suit or proceeding to which she/he may become involved by reason of her/his being or having been a member of the Board, officer, or employee of the corporation, or any settlement thereof, unless adjudged therein to be liable for negligence or misconduct in the performance of her/his duties. Provided, however, that in the event of a settlement the indemnification herein shall apply only when the Board approves such settlement and reimbursement as being in the best interest of the corporation. The foregoing right of indemnification shall be in addition and not exclusive of all other rights which such member of the Board, officer or employee is entitled.

Section 2.18. Insurance For Corporate Agents

Except as may be otherwise provided under provisions of law, the Board of Directors may adopt a resolution authorizing the purchase and maintenance of insurance on behalf of any agent of the Corporation (including a director, officer, employee, volunteer or other agent of the corporation) against liabilities asserted against or incurred by the agent in such capacity or arising out of the agent's status as such, whether or not the Corporation would have the power to indemnify the agent against such liability under the articles of incorporation, these bylaws, or provisions of law.

Article 3
Officers

Section 3.1. Designation of Officers

The officers of the Corporation shall be a chair, vice chair, secretary, treasurer, and president. The Corporation may also have one or more vice presidents, assistant secretaries, assistant treasurers, and other such officers with such titles as may be determined initially by the president and thereafter from time to time by the Board of Directors.

Section 3.2. Qualifications

Any person on the Board of Directors may serve as an officer of this Corporation.

Section 3.3. Election and Term of Office

Officers shall be initially appointed by the president and thereafter elected by the Board of Directors at the last meeting of the year held during the 4th calendar quarter. Terms of office shall commence January 1 of each year and last for term of one year. Officers may serve any number of terms, consecutive or otherwise, and shall hold office until he or she resigns or is removed or is otherwise disqualified to serve, or until his or her successor shall be elected and qualified.

Section 3.4. Removal and Resignation

Any officer may be removed, either with or without cause, by the Board of Directors, at any time. Any officer may resign at any time by giving written notice to the Board of Directors or to the chair, president or secretary of the corporation. Any such resignation shall take effect at the date of receipt of such notice or at any later date specified therein, and, unless otherwise specified therein, the acceptance of such resignation shall not be necessary to make it effective.

Section 3.5. Vacancies

Any vacancy caused by the death, resignation, removal, disqualification, or otherwise, of any officer shall be filled by the Board of Directors. In the event of a vacancy in any office other than that of president, such vacancy may be filled temporarily by appointment by the president until such time as the board shall fill the vacancy. Vacancies occurring in offices of officers appointed at the discretion of the board may or may not be filled as the board shall determine.

Section 3.6 Duties of Chair of the Board

The chair serves as the chief volunteer of the Corporation. The chair provides leadership to the Board and shall preside at all meetings of the Board of Directors. After the initial officer appointments, he or she shall nominate directors to serve in the offices of vice chair, secretary and treasurer. He or she shall be responsible for the conduct of the business of the Board. He or she shall perform all duties incident to his or her office and such other duties as may be required by law, by the articles of incorporation or by these bylaws, or which may be prescribed from time to time by the Board of Directors.

Section 3.7. Duties of President

The president shall be the chief executive officer of the corporation and shall, subject to the control of the board of directors, supervise and manage all affairs of the Corporation and of the activities of the staff and volunteers. He or she shall perform all duties incident to his or her office and such other duties as may be required by law, by the articles of incorporation or by these bylaws, or which may be prescribed from time to time by the Board of Directors. Except as otherwise expressly provided by law, by the articles of incorporation or by these bylaws, he or she shall, in the name of the Corporation, execute such deeds, mortgages, bonds, contracts, checks, or other instruments which may from time to time be authorized by the Board of Directors. The President will serve as the official spokesperson of the Corporation.

Section 3.8. Duties of Vice Chair

In the absence of the chair, or in the event of his or her inability or refusal to act, the vice chair shall perform all the duties of the chair, and when so acting shall have all the powers of, and be subject to all the restrictions on, the chair. The vice chair shall have other powers and perform such other duties as may be prescribed by law, by the articles of incorporation or by these bylaws, or as may be prescribed by the Board of Directors.

Section 3.9. Duties of Secretary

The secretary shall:

a. Certify and keep at the principal office of the Corporation or at such other place as the Board may determine the original, or a copy, of these bylaws as amended or otherwise altered to date.

b. Keep at the principal office of the Corporation or at such other place as the Board may determine, a book of minutes of all meetings of the directors, and, if applicable, meetings of committees of directors, recording therein the time and place of holding, whether regular or special, how called, how notice thereof was given, the names of those present or represented at the meeting and the proceedings thereof.

c. See that all notices are duly given in accordance with the provisions of these bylaws or as required by law.

d. Be custodian of the records of the Corporation. e. Exhibit at all reasonable times to any director of the Corporation on request therefore, the Bylaws, the minutes of the proceedings of the directors of the corporation.

e. In general, perform all duties incident to the office of secretary and such other duties as may be required by law, by the articles of incorporation or by these bylaws, or which may be assigned to him or her from time to time by the chair or Board of Directors.

Section 3.10. Duties of Treasurer

The treasurer shall complete or cause to be completed the following:

a. Working with appropriate staff to oversee management of the finances of the Corporation, and ensure deposit of all Corporation funds in such banks, trust companies, or other depositories as shall be selected by the board of directors.

b. Ensure maintenance and recordkeeping of adequate and correct accounts of the corporation's properties and business transactions, including accounts of its assets, liabilities, receipts, disbursements, gains, and losses.

c. Exhibit, or cause to be exhibited, at all reasonable times the books of account and financial records to any director of the corporation on request therefore.

d. Render, or cause to be rendered, to the president and directors, whenever requested, an account of any or all of his or her transactions as treasurer and of the financial condition of the corporation.

e. Prepare, or cause to be prepared, and certify, or cause to be certified, the financial statements to be included in any required reports.

f. In general, perform all duties incident to the office of treasurer and such other duties as may be required by law, by the articles of incorporation of the corporation or by these bylaws, or which may be assigned to him or her from time to time by the Board of Directors.

Section 3.11. Compensation

Officers shall serve without compensation except for a reasonable reimbursement for travel, lodging, per-diem and other reasonable expenses incurred in the performance of their duties, provided there is appropriate documentation of the expenses and the types of expenses have been approved by the Board of Directors. Officers who also serve in staff positions on behalf of the organization may be compensated reasonable salaries and benefits in their role as employees of the Corporation.

Article 4
Committees

Section 4.1. Executive Committee

The officers of the Corporation – consisting of the chair, president, vice-chair, secretary and treasurer – shall make-up the executive committee of the corporation. The executive committee shall exercise the powers and authority of the Board in the management of the business and affairs of the corporation between regular meetings of the full Board of Directors.

By a majority vote of its members, the Board may at any time revoke or modify any or all of the Executive Committee’s authority so delegated. The executive committee shall keep regular minutes of its proceedings, cause them to be filed with the corporate records, and report the same to the Board at the Board meeting immediately subsequent to the meeting of the Executive Committee or in such other fashion as the Board may require.

Section 4.2. Other Committees

The corporation shall have such other committees as may from time to time be designated by resolution of the board of directors. These committees may consist of persons who are not also members of the board and shall act in an advisory capacity to the Board.

Section 4.3. Meetings and Action of Committees

Meetings and action of committees shall be governed by, noticed, held, and taken in accordance with the provisions of these bylaws concerning meetings of the Board of Directors, with such changes in the context of such bylaw provisions as are necessary to substitute the committee for the Board of Directors. The Board of Directors may also adopt rules and regulations pertaining to the conduct of meetings of committees to the extent that such rules and regulations are not inconsistent with the provisions of these bylaws.

Article 5
Execution of Instruments, Deposits, and Funds

Section 5.1. Execution of Instruments

The Board of Directors, except as otherwise provided in these bylaws, may by resolution authorize any officer or agent of the Corporation to enter into any contract or execute and deliver any instrument in the name of and on behalf of the Corporation, and such authority may be general or confined to specific instances. Unless so authorized, no officer, agent, or employee shall have any power or authority to bind the corporation by any contract or engagement or to pledge its credit or to render it liable monetarily for any purpose or in any amount.

Section 5.2. Checks and Notes

Except as otherwise specifically determined by resolution of the Board of Directors, or as otherwise required by law, checks, drafts, promissory notes, orders for the payment of money, and other evidence of indebtedness of the Corporation shall be signed by the president/chief executive officer, provided, however, that the Board may by resolution require two signatures on checks equal to or exceeding a designated amount. Proper separation of financial controls shall be maintained, including: having the Board of Directors authorize transactions, either as specific line items in an annual budget or by Board resolution for items not in the budget; having the chief executive officer endorse checks; and having a non-signatory board member reviewing bank statements.

Section 5.3. Deposits

All funds of the Corporation shall be deposited from time to time to the credit of the Corporation in such banks, trust companies, or other depositories as the Board of Directors may select.

Section 5.4. Gifts

The Board of Directors may accept on behalf of the Corporation any contribution, gift, bequest, or devise for the nonprofit purposes of this corporation.

Article 6
Corporate Records, Reports, and Seal

Section 6.1. Maintenance of Corporate Records

The corporation shall keep at its principal office or alternate designated office:

a. Minutes of all meetings of directors and committees of the Board indicating the time and place of holding such meetings, whether regular or special, how called, the notice given, and the names of those present and the proceedings thereof;

b. Adequate and correct books and records of account, including accounts of its properties and business transactions and accounts of its assets, liabilities, receipts, disbursements, gains, and losses;

c. A copy of the corporation's articles of incorporation and bylaws as amended to date.

The corporation shall make appropriate records accessible to its Board of Directors and the public in accordance with applicable law.

Section 6.2. Periodic Report

The Board shall cause any annual or periodic report required under law to be prepared and delivered to an office of this state or to the members, if any, of this Corporation, to be so prepared and delivered within the time limits set by law.

Article 7
Amendment of Bylaws

Except as may otherwise be specified under provisions of law, these bylaws, or any of them, may be altered, amended, or repealed and new bylaws adopted by approval of the Board of Directors through a simple majority vote, provided that a minimum of thirty (30) days prior notice of the proposed amendments is provided to the directors.

Article 8
Construction and Terms

If there is any conflict between the provisions of these bylaws and the articles of incorporation of this Corporation, the provisions of the articles of incorporation shall govern.

Should any of the provisions or portions of these bylaws be held unenforceable or invalid for any reason, the remaining provisions and portions of these bylaws shall be unaffected by such holding.

All references in these bylaws to the articles of incorporation shall be to the articles of incorporation, articles of organization, certificate of incorporation, organizational charter, corporate charter, or other founding document of this corporation filed with an office of this state and used to establish the legal existence of this corporation.

Adopted: April 22, 2006