THE ANGEL AID ONLINE COMMUNITY
A private community made up of other Rare Mothers who truly understand. ANGEL AID’s community is free, and includes several different weekly self-care workshops.
(Hosted through Mighty Networks)
When you join, You get:
Uplifting Gifting
Uplifting gifting packages come at unannounced times throughout the year. They are meant to be a welcomed surprise and provide a tangible sense of support.
Previous packages have included journals, candles, jewelry, blankets, and more!
Community
When you join the ANGEL AID’s online community, you get:
Access to weekly self-care workshops run by experienced practitioners and designed to foster connections between Rare Mothers and help you maintain your own health and wellness
A private community to build relationships and share experiences with other Rare Mothers
Monthly meetups that provide a space to talk about things only other Rare Mothers would understand
Crisis Support
Rare disease help lines are available in many countries. These help lines are intended to provide support and contact information for various rare diseases
Do You Need Help Now?
For immediate help, call the National Suicide Prevention Lifeline at 1-800-273-8255 or text ‘SIGNS’ to 741741.
Both services are free and available 24/7.
“Being a caregiver is isolating sometimes…who am I outside of a mother and wife? These conversations are so helpful. Getting support and ideas from other people.”
— Robin, Rare Mother, Polymicrogyria (PMG)
Benefits
Our self-care workshops offer tools to help cultivate skills to care for yourself, making you happier and healthier — mentally, emotionally, and physically.
Our community is unique. We are a group of mothers who love as deep and as strong as you do. We can relate to you and your experiences.
You can be yourself here. You don’t have to wear a brave face or force a smile. You don’t have to pretend like every day is a good day.
“I think that something other mothers need all over the world is our stories and our smiles.
”
— Phyllis, Rare Mother, Mucopolysaccharidosis (MPS)
“I am just so grateful to connect as women and not have to start at the very beginning.”
— Lynn, Rare Mother, Mucopolysaccharidosis (MPS)
Rare Diseases Represented in our Community
14q12 Deletion
5p- Syndrome
5q31.3-5q32 Microdeletion
Aarskog Syndrome
Abetalipoproteinemia
Abetalipoproteinemia,
ADCY5-related dyskinesia
Adenylosuucinate Lyase Defiency (ALD)
Adrenoleukodystrophy (ALD)
Adult Polyglucosan Body Disease
Alpa 1 AD
Alpha-Mannosidosis
Angelman Syndrome
Anorectal Malformation/Atresia
Arterial Tortuosity Syndrome
ASMD (Niemann Pick Type A and B)
Aspartylglucoseaminuria (AGU)
Asplenia
Bainbridge Ropert Syndrome
Balint Syndrome (RELN)
Bardet Bield Syndrome
BBSOAS (NR2F1 Mutation)
Behcets
Bosch Boonstra Schaaf Optic Atrophy Syndrome (BBSOAS)
BPAN
CAMTA1
Chromosome 13 Disorder
Chromosome 3P Deletion Syndrome
Chronic Granulomatous Disease
Chronic Granulomatous Disease (CGD)
Chronic Idiopathic Thrombocytopenia
CMT4B3
Coffin Lowry syndrome
Cohen Syndrome
Congenital Muscular Dystrophy
Constitutional Mismatch Repair Deficiency Syndrome
Cowden Syndrome
Cystinosis
DDX3X
Dent Disease
Desbuquois Dysplasia
DNM1 genetic mutation
Dravet Syndrome
Duchenne Muscular Dystrophy
DYRK1A Syndrome
Dysautomia
Dysgammaglobulinanemia (CVID)
Ehlers Danlos
Epidermolysis Bullosa (EB)
Factor VII Deficiency
Familial Mediterranean Fever
FOP (Fibrodysplasia Ossificans Progressiva)
FOXG1 Syndrome
Fucosidosis
Gauchet Disease Type 2
Gauchet Disease Type 2
Giant Axonal Neuropathy (GAN)
Glut1 Deficiency
GRIN Disorder
Hemophagocytic Lymphohistiocytosis (HLH)
Hereditary Transthyrein Amylydosos
Histiocytosis
Homozygous Familial Hypercholesterolemia
Hypermobile Ehler's Danlos Syndrome
Hypertrophic Cardiomyopathy
Hypoplastic Left Heart Syndrome (HLHS)
Hypoplastic Right Heart Syndrome (HRHS)
Idiopathic Hypersomnia
Idiopathic Intracranial Hypertension
Infantile Pompe
IRF2BPL NEDAMSS
Kawasaki Disease
Krabbe
Lafora Body disease
Leukodystrophy
LGS Lennox Gustaut Syndrom
Macrothrombocytopenia
Malan Syndrome
Mandibulofacial Dysostosis with Microcephaly
Marqiou A
Mast Cell Activation Syndrome
MECP2 Duplication Syndrome
MECP2 Duplication Syndrome
Menkes Syndrome
MERRF
Methylmalonic Acidemia Mut0
Mitochondrial Disease
Moyamoya
MPEG1/Perforin-2
MPS I Hurler's Syndrome
MPS II Hunter's Syndrome
MPS3A
MPS3A
Mucolipidosis II/I-cell Disease
Myasthenia Gravis
Narcolepsy Type 1
NBIA Disorder
Nemaline Myopathy
NEMO
Neurofibromatosis 1
Neuronopathic Gaucher Disease (type 3)
NIemann Pick Diseases
Noonan Syndrome
NUBPL
OI Osteogenesis Imperfecta
Okur-Chung Neurodevelopmental Syndrome
Ollier's Disease
Olliers disease
Opitz-Kaveggia Syndrome (FG1 Syndrome)
Ornithine Transcarbamylase (OTC) Deficiency
Osteogenesis Imperfecta
Osteopetrosis
OTC Urea Cycle Disorder
PACS1 Syndrome
Pallister-Killian Syndrome
PANS
Paroxysmal Tonic Upgaze (PTU)
PCDH19 (Female Clustering Epilepsy)
PCDH19 (Protocadherin 19)
Pelizaeus Merzbacher Disease
PFIC Type 2 Progressive Familial Intrahepatic Cholestasis
Phenylkutoria (PKU)
PIK3CA (CLOVES Disease)
PKAN (Pantothanate Kinase- Associated Neurodegneration)
POMC (2p23.3 Proopiomelanocortin Deficiency)
Pompe Disease
Postural Orthostatic Tachycardia Syndrome
Prader-Willi Syndrome
Primary Immunodeficiency
Propionic Acidemia
r853q mutation in hSCN2a gene
Recessive RYR
Rett Syndrome
Ritscher Schinzel Syndrome (WASHC5 Gene)
Sanfillipo Syndrome
SAS (SATB2-Associated Syndrome) (Glass Syndrome)
Schaaf-Yang Syndrome
Schizencephaly
SCN2A
SCN8A-Related Epilepsy
SDH-Deficient GIST
SEPN1 Related Myopathy
SETD5 Syndrome
Shprintzen Goldberg Syndrome
Shwachman Diamond Syndrome
Shwachman Diamond Syndrome
Sickle Cell Disease
SLC6A1,
SMC1A Epilepsy
Spinal Muscular Atrophy (SMA)
STXBP1
SYNGAP 1
Systemic Mastocytosis
Systemic Mastocytosis
Tay Sachs Disease
THAP12 Mutations
Tuberous Sclerosis
UBA5 gene mutation
Urea Cycle Disorder (UCD)
VACTERL
Variant on FAM177A1 Gene
Von Willebrand's Disease Type 3
Von-hippel Lindau Syndrome
WAGR
Wilson’s Disease
Wolfhirschhorn Syndrome
X- Linked PVNH
X-linked Myotubular Myopathy
Xeroderma pigmentosum
Have questions? Contact our Community Manager at paige@angelaidcares.org.