Are you the CareGiver or an Individual with BBS?
Please select...
CareGiver
Individual
CareGiver Details
Prefix
Please select...
Mr.
Ms.
Mrs.
Dr.
Prof.
Mx.
First Name
Last Name
Email
Please use the same email if you are our returning members.
x
Relation to person diagnosed w/ BBS
Please select...
Mother
Father
Grandparent
Aunt
Uncle
Other
Husband
Wife
State/Province
Please select...
Alabama
Alaska
Alberta
Arizona
Arkansas
British Columbia
California
Colorado
Connecticut
Delaware
District of Columbia
Florida
Georgia
Hawaii
Idaho
Illinois
Indiana
Iowa
Kansas
Kentucky
Louisiana
Maine
Manitoba
Maryland
Massachusetts
Michigan
Minnesota
Mississippi
Missouri
Montana
Nebraska
Nevada
New Brunswick
New Hampshire
New Jersey
New Mexico
New York
Newfoundland and Labrador
None
North Carolina
North Dakota
Northwest Territories
Nova Scotia
Nunavut
Ohio
Oklahoma
Oregon
Pennsylvania
Prince Edward Island
Puerto Rico
Quebec
Rhode Island
South Carolina
South Dakota
Tennessee
Texas
Utah
Vermont
Virginia
Washington
West Virginia
Wisconsin
Wyoming
Street Address
City
Zip/Postal Code
Country
Please select...
United States
Canada
Argentina
Afghanistan
Albania
Algeria
Andorra
Angola
Antigua & Deps
Armenia
Australia
Austria
Azerbaijan
Bahamas
Bahrain
Bangladesh
Barbados
Belarus
Belgium
Belize
Benin
Bhutan
Bolivia
Bosnia Herzegovina
Botswana
Brazil
Brunei
Bulgaria
Burkina
Burundi
Cambodia
Cameroon
Cape Verde
Central African Rep
Chad
Chile
China
Colombia
Comoros
Congo
Congo {Democratic Rep}
Costa Rica
Croatia
Cuba
Cyprus
Czech Republic
Denmark
Djibouti
Dominica
Dominican Republic
East Timor
Ecuador
Egypt
El Salvador
Equatorial Guinea
Eritrea
Estonia
Ethiopia
Fiji
Finland
France
Gabon
Gambia
Georgia
Germany
Ghana
Greece
Grenada
Guatemala
Guinea
Guinea-Bissau
Guyana
Haiti
Honduras
Hungary
Iceland
India
Indonesia
Iran
Iraq
Ireland {Republic}
Israel
Italy
Ivory Coast
Jamaica
Japan
Jordan
Kazakhstan
Kenya
Kiribati
Korea North
Korea South
Kosovo
Kuwait
Kyrgyzstan
Laos
Latvia
Lebanon
Lesotho
Liberia
Libya
Liechtenstein
Lithuania
Luxembourg
Macedonia
Madagascar
Malawi
Malaysia
Maldives
Mali
Malta
Marshall Islands
Mauritania
Mauritius
Mexico
Micronesia
Moldova
Monaco
Mongolia
Montenegro
Morocco
Mozambique
Myanmar, {Burma}
Namibia
Nauru
Nepal
Netherlands
New Zealand
Nicaragua
Niger
Nigeria
Norway
Oman
Pakistan
Palau
Panama
Papua New Guinea
Paraguay
Peru
Philippines
Poland
Portugal
Qatar
Romania
Russian Federation
Rwanda
St Kitts & Nevis
St Lucia
Saint Vincent & the Grenadines
Samoa
San Marino
Sao Tome & Principe
Saudi Arabia
Senegal
Serbia
Seychelles
Sierra Leone
Singapore
Slovakia
Slovenia
Solomon Islands
Somalia
South Africa
South Sudan
Spain
Sri Lanka
Sudan
Suriname
Swaziland
Sweden
Switzerland
Syria
Taiwan
Tajikistan
Tanzania
Thailand
Togo
Tonga
Trinidad & Tobago
Tunisia
Turkey
Turkmenistan
Tuvalu
Uganda
Ukraine
United Arab Emirates
United Kingdom
Uruguay
Uzbekistan
Vanuatu
Vatican City
Venezuela
Vietnam
Yemen
Zambia
Zimbabwe
Is the address the same for the dependents of the caregiver?
Please select...
Yes
No
Mobile Phone
Other Phone
Individual with BBS
Background
Prefix
Please select...
Mr.
Ms.
Mrs.
Dr.
Prof.
Mx.
First Name
Last Name
Sex
Please select...
Male
Female
Prefer not to answer
Birthdate
How many people are diagnosed w/ BBS in the family?
Please select...
1
2
3
4
5
What are the names of the individuals diagnosed?
Street Address
City
State/Province
Please select...
Alabama
Alaska
Alberta
Arizona
Arkansas
British Columbia
California
Colorado
Connecticut
Delaware
District of Columbia
Florida
Georgia
Hawaii
Idaho
Illinois
Indiana
Iowa
Kansas
Kentucky
Louisiana
Maine
Manitoba
Maryland
Massachusetts
Michigan
Minnesota
Mississippi
Missouri
Montana
Nebraska
Nevada
New Brunswick
New Hampshire
New Jersey
New Mexico
New York
Newfoundland and Labrador.
North Carolina
North Dakota
Northwest Territories
Nova Scotia
Nunavu
Ohio
Oklahoma
Oregon
Pennsylvania
Prince Edward Island
Puerto Rico
Quebec
Rhode Island
South Carolina
South Dakota
Tennessee
Texas
Utah
Vermont
Virginia
Washington
West Virginia
Wisconsin
Wyoming
Zip/Postal Code
Country
Please select...
United States
Canada
Afghanistan
Albania
Algeria
Andorra
Angola
Antigua & Deps
Argentina
Armenia
Australia
Austria
Azerbaijan
Bahamas
Bahrain
Bangladesh
Barbados
Belarus
Belgium
Belize
Benin
Bhutan
Bolivia
Bosnia Herzegovina
Botswana
Brazil
Brunei
Bulgaria
Burkina
Burundi
Cambodia
Cameroon
Cape Verde
Central African Rep
Chad
Chile
China
Colombia
Comoros
Congo
Congo {Democratic Rep}
Costa Rica
Croatia
Cuba
Cyprus
Czech Republic
Denmark
Djibouti
Dominica
Dominican Republic
East Timor
Ecuador
Egypt
El Salvador
Equatorial Guinea
Eritrea
Estonia
Ethiopia
Fiji
Finland
France
Gabon
Gambia
Georgia
Germany
Ghana
Greece
Grenada
Guatemala
Guinea
Guinea-Bissau
Guyana
Haiti
Honduras
Hungary
Iceland
India
Indonesia
Iran
Iraq
Ireland {Republic}
Israel
Italy
Ivory Coast
Jamaica
Japan
Jordan
Kazakhstan
Kenya
Kiribati
Korea North
Korea South
Kosovo
Kuwait
Kyrgyzstan
Laos
Latvia
Lebanon
Lesotho
Liberia
Libya
Liechtenstein
Lithuania
Luxembourg
Macedonia
Madagascar
Malawi
Malaysia
Maldives
Mali
Malta
Marshall Islands
Mauritania
Mauritius
Mexico
Micronesia
Moldova
Monaco
Mongolia
Montenegro
Morocco
Mozambique
Myanmar, {Burma}
Namibia
Nauru
Nepal
Netherlands
New Zealand
Nicaragua
Niger
Nigeria
Norway
Oman
Pakistan
Palau
Panama
Papua New Guinea
Paraguay
Peru
Philippines
Poland
Portugal
Qatar
Romania
Russian Federation
Rwanda
St Kitts & Nevis
St Lucia
Saint Vincent & the Grenadines
Samoa
San Marino
Sao Tome & Principe
Saudi Arabia
Senegal
Serbia
Seychelles
Sierra Leone
Singapore
Slovakia
Slovenia
Solomon Islands
Somalia
South Africa
South Sudan
Spain
Sri Lanka
Sudan
Suriname
Swaziland
Sweden
Switzerland
Syria
Taiwan
Tajikistan
Tanzania
Thailand
Togo
Tonga
Trinidad & Tobago
Tunisia
Turkey
Turkmenistan
Tuvalu
Uganda
Ukraine
United Arab Emirates
United Kingdom
Uruguay
Uzbekistan
Vanuatu
Vatican City
Venezuela
Vietnam
Yemen
Zambia
Zimbabwe
Email
Please use the same email if you are our returning members.
x
Mobile Phone
Other Phone
Diagnosis
Did you have a genetic test?
Please select...
Yes
No
Prefer not to say
Genes Identified
Please select...
BBS1
BBS2
BBS3
BBS4
BBS5
BBS6
BBS7
BBS8
BBS9
BBS10
BBS11
BBS12
BBS13
BBS14
No findings
Other
Other Diagnosis
Symptoms
Symptoms
Vision Issues
Other Sensory Issues (e.g. smell, taste, pain)
Kidney/Nephrological Issues
Obesity
Other Metabolic Issues (e.g. high blood pressure, metabolic syndrome)
Neurological Issues/Cognitive Delay or Deficit
Cardiac Issues
Bone/Joint Issues (e.g. Legg-Perthes, joint dislocation)
Endocrinological Issues (e.g. thyroid disease, abnormal hormone levels)
Sleep Issues (e.g. sleep apnea)
Lung or Breathing Issues (asthma, frequent infections)
Oral or Teeth Issues
In-Depth Symptom Questions
Visual Impairment
Check all that apply:
Please select...
Can read print (Paper or Electronic)
Night blindness
Legally blind
Uses braille
Uses screen reader
Uses cane
Guide dog
Other comments on their visual impairment
Kidney Disease
Please select...
Stage 1
Stage 2
Stage 3
Stage 3a
Stage 3b
Stage 4
Stage 5
N/A
Other comments on their kidney disease
Neurologic/Cognitive Development
Autism Spectrum?
Yes
No
Speech Delay?
Yes
No
School Performance?
Please select...
At grade level
Below grade level
Above grade level
If still in school, what level did they complete in Spring 2023?
K
1st Grade
2nd Grade
3rd Grade
4th Grade
5th Grade
6th Grade
7th Grade
8th Grade
9th Grade
10th Grade
11th Grade
12th Grade
IEP in school?
Yes
No
If yes, what was included in IEP?
One-on-one
Speech-therapy
PT
OT
Visual support
If adult, the highest level of education completed?
Please select...
Adult Basic Education (ABE)
General Education Development (GED)
English as a Second Language (ESL)
Career and Technical Education (CTE)
Associate's Degree
Bachelor's Degree
Master's Degree
Doctoral Degree
If adult, employed?
Yes
No
If yes, what type of employment?
Weight Management
Current BMI, if known?
Check any/all weight management interventions that apply:
Please select...
Special Diet
Restricted access to food
Prescribed exercise
Setmelanotide (IMCIVREE)
Other weight management treatment
What other symptoms impact your or their life the most?
Person Diagnosed with BBS
Background
Prefix
Please select...
Mr.
Ms.
Mrs.
Dr.
Prof.
Mx.
First Name
Last Name
Relation to the Caregiver?
Please select...
Friend
Family
Coworker
Father
Mother
Parent
Son
Daughter
Child
Aunt
Uncle
Husband
Wife
Partner
Cousin
Grandmother
Grandfather
Grandparent
Grandson
Granddaughter
Grandchild
Employer
Employee
Spouse
Sex
Please select...
Male
Female
Prefer not to answer
Birthdate
Address and Contact Details
Street Address
Street Address
City
City
State/Province
State/Province
Please select...
Alabama
Alaska
Alberta
Arizona
Arkansas
British Columbia
California
Colorado
Connecticut
Delaware
District of Columbia
Florida
Georgia
Hawaii
Idaho
Illinois
Indiana
Iowa
Kansas
Kentucky
Louisiana
Maine
Manitoba
Maryland
Massachusetts
Michigan
Minnesota
Mississippi
Missouri
Montana
Nebraska
Nevada
New Brunswick
New Hampshire
New Jersey
New Mexico
New York
Newfoundland and Labrador
None
North Carolina
North Dakota
Northwest Territories
Nova Scotia
Nunavut
Ohio
Oklahoma
Oregon
Pennsylvania
Prince Edward Island
Puerto Rico
Quebec
Rhode Island
South Carolina
South Dakota
Tennessee
Texas
Utah
Vermont
Virginia
Washington
West Virginia
Wisconsin
Wyoming
Zip/Postal Code
Zip/Postal Code
Country
Country
Please select...
United States
Canada
Afghanistan
Albania
Algeria
Andorra
Angola
Antigua & Deps
Argentina
Armenia
Australia
Austria
Azerbaijan
Bahamas
Bahrain
Bangladesh
Barbados
Belarus
Belgium
Belize
Benin
Bhutan
Bolivia
Bosnia Herzegovina
Botswana
Brazil
Brunei
Bulgaria
Burkina
Burundi
Cambodia
Cameroon
Cape Verde
Central African Rep
Chad
Chile
China
Colombia
Comoros
Congo
Congo {Democratic Rep}
Costa Rica
Croatia
Cuba
Cyprus
Czech Republic
Denmark
Djibouti
Dominica
Dominican Republic
East Timor
Ecuador
Egypt
El Salvador
Equatorial Guinea
Eritrea
Estonia
Ethiopia
Fiji
Finland
France
Gabon
Gambia
Georgia
Germany
Ghana
Greece
Grenada
Guatemala
Guinea
Guinea-Bissau
Guyana
Haiti
Honduras
Hungary
Iceland
India
Indonesia
Iran
Iraq
Ireland {Republic}
Israel
Italy
Ivory Coast
Jamaica
Japan
Jordan
Kazakhstan
Kenya
Kiribati
Korea North
Korea South
Kosovo
Kuwait
Kyrgyzstan
Laos
Latvia
Lebanon
Lesotho
Liberia
Libya
Liechtenstein
Lithuania
Luxembourg
Macedonia
Madagascar
Malawi
Malaysia
Maldives
Mali
Malta
Marshall Islands
Mauritania
Mauritius
Mexico
Micronesia
Moldova
Monaco
Mongolia
Montenegro
Morocco
Mozambique
Myanmar, {Burma}
Namibia
Nauru
Nepal
Netherlands
New Zealand
Nicaragua
Niger
Nigeria
Norway
Oman
Pakistan
Palau
Panama
Papua New Guinea
Paraguay
Peru
Philippines
Poland
Portugal
Qatar
Romania
Russian Federation
Rwanda
St Kitts & Nevis
St Lucia
Saint Vincent & the Grenadines
Samoa
San Marino
Sao Tome & Principe
Saudi Arabia
Senegal
Serbia
Seychelles
Sierra Leone
Singapore
Slovakia
Slovenia
Solomon Islands
Somalia
South Africa
South Sudan
Spain
Sri Lanka
Sudan
Suriname
Swaziland
Sweden
Switzerland
Syria
Taiwan
Tajikistan
Tanzania
Thailand
Togo
Tonga
Trinidad & Tobago
Tunisia
Turkey
Turkmenistan
Tuvalu
Uganda
Ukraine
United Arab Emirates
United Kingdom
Uruguay
Uzbekistan
Vanuatu
Vatican City
Venezuela
Vietnam
Yemen
Zambia
Zimbabwe
Mobile Phone
Other Phone
Diagnosis
Did you have a genetic test?
Yes
No
Prefer not to say
Genes Identified
Please select...
BBS1
BBS2
BBS3
BBS4
BBS5
BBS6
BBS7
BBS8
BBS9
BBS10
BBS11
BBS12
BBS13
BBS14
No findings
Other
Other Diagnosis
Symptoms
Symptoms
Vision Issues
Other Sensory Issues (e.g. smell, taste, pain)
Kidney/Nephrological Issues
Obesity
Other Metabolic Issues (e.g. high blood pressure, metabolic syndrome)
Neurological Issues/Cognitive Delay or Deficit
Cardiac Issues
Bone/Joint Issues (e.g. Legg-Perthes, joint dislocation)
Endocrinological Issues (e.g. thyroid disease, abnormal hormone levels)
Sleep Issues (e.g. sleep apnea)
Lung or Breathing Issues (asthma, frequent infections)
Oral or Teeth Issues
In-Depth Symptom Questions
Visual Impairment
Check all that apply:
Please select...
Can read print (Paper or Electronic)
Night blindness
Legally blind
Uses braille
Uses screen reader
Uses cane
Guide dog
Other comments on visual impairment
Kidney Disease
Please select...
Stage 1
Stage 2
Stage 3
Stage 3a
Stage 3b
Stage 4
Stage 5
N/A
Other comments on kidney disease
Neurologic/Cognitive Development
Autism Spectrum?
Yes
No
Speech Delay?
Yes
No
School Performance?
Please select...
At grade level
Below grade level
Above grade level
If still in school, what level did they complete in Spring 2023?
K
1st Grade
2nd Grade
3rd Grade
4th Grade
5th Grade
6th Grade
7th Grade
8th Grade
9th Grade
10th Grade
11th Grade
12th Grade
IEP in school?
Yes
No
If yes, what was included in IEP?
One-to-one
Speech therapy
PT
OT
Visual support
If adult, the highest level of education completed?
Please select...
Adult Basic Education (ABE)
General Education Development (GED)
English as a Second Language (ESL)
Career and Technical Education (CTE)
Associate's Degree
Bachelor's Degree
Master's Degree
Doctoral Degree
If adult, employed?
Yes
No
If yes, what type of employment?
Weight Management
Current BMI, if known?
Check any/all weight management interventions that apply:
Please select...
Special Diet
Restricted access to food
Prescribed exercise
Setmelanotide (IMCIVREE)
Other weight management treatment
What other symptoms impact your or their life the most?
Page 2 - BBS Foundation Engagement
History with BBS Foundation
Have you attended a BBS Foundation conference/meeting?
Yes
No
What conference(s)/meeting(s)?
Are you on or do you follow the BBS Foundation Facebook page?
Yes
No
Other engagement with the BBS Foundation?
Additional Support - Unmet Needs
How can the foundation better support you?
Volunteering Experience
Are you interested in volunteering for the BBS Foundation?
Yes
No
Do you have a skill that could help the BBS Foundation?
Page 3 - Healthcare Providers
Are you registered in CRIBBS?
Yes
No
Have you attended the Center for Excellence in Marshfield, WI?
Yes
No
Any comments about CRIBBS or Center of Excellence?
Healthcare Providers Information
Hospital/Institution(s) Name
Primary Healthcare Provider
Provider First Name
Provider Last Name
Specialty
City they practice in
State/Province they practice in
Country they practice in
Other comments
Please be patient, it may take a few moments for your submission to process.
Contact Information